Topic: Encephalopathy and IV Rocephin- My Success With This
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi All-
Many of you have sent me e-mails asking about my encephalopathy and treatment with IV Rocephin. I'm going to try to answer all of your questions with this post (if not, PM me again if you don't want to post here!):
1) How long were you misdiagnosed?
A: One year after tickbite and bullseye rash
2) Did you try orals before IV Rocephin?
A: Yes, I tried zithromax and doxycyclene and, I think Ceftin, but they did not work for me
3) What were your cognitive symptoms?
A: I was cognitively imparied but at times it seemed worse than at other times.....almost episodic in a sense....couldn't read a paragraph...couldn't hold my attention on any television program...couldn't follow a football game or a card game....walked into a room full of my friends and couldn't remember their names....would cry for absolutely no reason....easily startled....I had to quit my high-functioning corporate job where I oversaw a division because I basically couldn't read, add or subtract, or write a check.....would lose track of where I was....(I was tested for everything else under the sun...stroke..etc...and all of those tests were negative (except for lyme)...
4) How did you get your PICC line?
It was prescribed by an LLMD for whom I will be forever indebted...I had to travel to see him (as they don't have lyme where I live) and my local GP worked with my local infusion therapy clinic to do the weekly blooddraws. I can remember driving to this clinic and concentrating so desperately to keep the car in between the lines (don't be a hero; have someone drive you!!!)
5) Was your Rocephin covered by insurance?
A: Yes, but I was on a self-funded plan through my employer at the time so I had my employer put pressure on them to cover it....
6) Did you have to leave your job?
A: Yes, I had to go on disability....
7) How long were you on the IV Rocephin and how long did it take you to see progress while you were on it?
A: I was on it for 120 days and was heavily monitored. I took Ursodiol for my gallbladder and probiotics the entire time. This was so long ago that I can't remember when I started to improve. I seem to recall, however, that the improvement was gradual and subtle. I do know that my family noticed it first. I also know that all of my cognitive improvement DID NOT occur simultaneous to the administration of the IV Rocephin. It gradually improved over time after the cessation of the IV Rocephin. I recall reading recently about lyme in the Journal of ARthritis and it said that it can take many months/year to get over the effects of encephalopathy (pain, fatigue, confusion)....
It's like a nuclear bomb of inflammation has been dropped inside your body
8) Did you regain all of your cognitive functioning?
A: Yes, ALL OF IT but it took over a year after I stopped the IV Rocephin.....I remember feeling terrified that would never happen.....But, it did...
9) What do you recommend, if anything?
A: If you have someone in your life, a friend even, contact that person and ask them to oversee some things for you/pay bills/put your meds in a pill box for you.....Drive you places...Print off something about encephalopathy and let them read it so they understand the magnitude of your impairment....It's hard as hell to ask for help but you need it....
Also, ANTI-INFLAMMATORIES.....Please, please, please discuss these with your LLMDs....
Personally, I think there are often disparities in people's health on lymenet because our immune systmes/inflammatory reactions are so individual...It can be impacted, too, by what we take (or don't take)..
Fish oil, fish oil, fish oil: Please talk with your LLMD regarding how much to take; I do think the DOSAGE is key....For those taking fish oil, it can take awhile to see any improvements on this...If you look at the studies where patients with Rheumatoid Arthritis were taking 3 grams a day for improvement, it took most 12 WEEKS before they saw improvement...So many of us on lymenet will try things and give up on them out of frustration...I know..I'm one of them!!!
10) Anything you would have done differently?
A: Oh Yes!!! In my personal experience because I didn't get immediately well after IV Rocephin I assumed I must have a coinfection. (I tested negative for all of them). However, I proceeded to treat for certain coinfections like babesia for months and was in incredible pain and fatigue. I thought if I suffered through this I would eventually get better. Wrong. I realize some people have coinfections and I'm not saying "to not treat for them." I'm just saying that i think my real problem was just the residual nuclear bomb of inflammation from the lyme.
I think I'm one of those people with an overreactive immune system. The inflammation goes out of control!!! If I had it to do all over again I would have perhaps treated with strong immune modulators/anti-inflammatories like plaquenil or minocyclene. (Right now I use high dose Vitamin D and fish oil to modulate my immune system/inflammation as I am trying to avoid plaq or mino due to possible side effects)....
I have a minority opinion on this board as I do believe an autoimmune state does come into play for some of us who don't fully recover....Whether it's active infection, the residual spirochetal bodies lodged in tissue, or the OspA proteins causing the chronic inflammation, I certainly don't know...However, I do think that one of these can cause our own bodies immune systems to be overactive (a type of autoimmunity) that can create morning stiffness, fatigue, and joint/muscle stiffness....(similar to what many RA patients feel)....
That's why, for some, immune modulators like plaquenil or minocyclene or Vitamin D or fish oil might be of benefit (not for everyone, just some of us perhaps)
...this is just my personal experience and I'm not advocating this for everyone....
..Hope this helps someone....
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Thank you so much, Bugg! 'Lots of good stuff here!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Thank you for posting this. It is very helpful.
Did you ever take Anti-inflammatory drugs, like Celebrex or ibuprofen? I think you are right about the immune issues... it is hard to calm down our agitated systems, after they have had to be in high gear for so long.
misty
-------------------- 12yo Daughter w/severe anxiety, fatigue, dizziness, BPII - IGM 41+, 23+ and IGG 66+, 41+ Self - Undiagnosed - have peripheral neuropathy, hearing loss, facial tics, fatigue and a MRI w/lots of lesions. Posts: 26 | From Worcester, MA | Registered: Sep 2010
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Thank you for your thoughtful and informative post. Good stuff. Congrats on your treatment successes!
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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quote:I have a minority opinion on this board as I do believe an autoimmune state does come into play for some of us who don't fully recover....Whether it's active infection, the residual spirochetal bodies lodged in tissue, or the OspA proteins causing the chronic inflammation, I certainly don't know...However, I do think that one of these can cause our own bodies immune systems to be overactive (a type of autoimmunity) that can create morning stiffness, fatigue, and joint/muscle stiffness....(similar to what many RA patients feel)....
I am in the minority that thinks that people with chronic Lyme have a retrovirus (probably XMRV).
I think with certain immune systems (us) it can be difficult to impossible to rid of the Lyme bacteria. When I go off antimicrobials, symptoms creep back in about 3 weeks. And then, herxheimer reactions once again. But that being said, I have never been symptom free. I've got some weird stuff going on right now, but I am much, much, better than I used to be. Night and day.
I say be careful with the vitamin D. I think it's a double-edged sword. You need it, but not too much. I say monitor both your "active" and "in-active" vitamin D stores. I may be an anomaly, but I notice at times I am doing better, my active vitamin D can drop well within the normal range.
I do think Lyme can cause various auto-immune or auto-immune like states. The question is, if there is an underlying retrovirus, can treating this retrovirus rid of some or many of these so-called auto-immune states.
While Lyme can leave behind residual damage, I don't think most people with a true case of chronic Lyme get rid of the spirochete.
quote:During the presentation and the Q&A session. In the presentation they referenced a study where 65 Chronic Lyme Disease patients were tested for XMRV, and 100% came back positive. This was the most reactive group the WPI has seen. That is a higher rate than ME/CFS! I thought Annette Whittemore said it best, �Every time we hear something new about XMRV, we find a similar finding within Lyme. It�s amazing!�
Note: My opinion goes way back. I held this position before any of the "experts" started speaking.
All that being said, if you don't have immune abnormalities (especially low CD57), the good news is you may not have chronic Lyme disease, and in your case, it may just be a regular case of Lyme encephalopathy with residual damage.
There were some medical journals about XMRV and possible contamination that all spawned the same day, but if Judy Mikovits is telling the whole truth (and she sounds as honest and confident as they come), it shouldn't be too long until XMRV neuro-immune disease link is accepted. She has already addressed all the concerns of the skeptics, and their journals and contamination theories are now looking moot to me.
I wish you luck.
P.S. Rocephin can be great help in chronic Lyme, but since it is a beta-lactam antibiotic, it acts much like a bacteriostatic when the Lyme are not in their reproductive cycle. While I know it's possible to get rid of an active Lyme infection with these antibiotics, Dr. B and Pam Weintraub went off all antibiotics, waited for relapse, and then nuked them with Ceftin every time until they had no further relapses. I forget how long this took Pam Weintraub, but if I remember correctly, Dr. B used this technique on himself for years (or maybe it was 1 year?) until he was symptom free. Excuse my poor memory.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
MistyB-
I never tried Celebrex or any of the DMARDS. Also, when I was at my sickest, Ibuprofen wouldn't even touch the pain (it even seemed to make me feel sicker)....During those times, Flexeril was the only thing that worked for me....Lymeinhell on this board has some good posts on Flexeril and magnesium....
I can now take Ibuprofen but try to go a more natural route for treating my daily inflammation (which I still battle)...it's a process....
I may give in one of these days and try a maintenance dose of plaquenil (I'm just afraid of the side effects??i've read mixed reviews...)
One other thing I wanted to note is that you really need to stay on top of your mental health when you're recovering from encephalopathy...I remember struggling profoundly with anxiety and depression.....I also remember it just being scary as hell at times...like I was trapped in a nightmare...I remember my husband trying to wake me up when I was on IV Rocephin and practically having to "shake me" to get me alert enough to eat....
...It's like "night and day" now for me now...
Kday-I appreciate your post..thanks so much for that...
Posts: 1155 | From Southeast | Registered: Oct 2005
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