I had my 2 month check up today at the clinic. We discussed the 60 days of treatment conditions the medical board has placed on them. We layed out a 2 month game plan with meds I still have stockpiled.
I am to go back on a every other day pulse of levaquin and minocycline for 2 wks adding flagyl the last 4 days. Then take a 2 wk holiday, detox, work on suppliments. Then 2 month treatment I go back on augument & minocycline 2 wks every other day and then skip 2 wks drug holiday.
I am to add DHEA 25mg 1 tab in the am. This is to help my hormone levels.
I am to go back on Neurotin, Q10, B100 and make a high in antioxidants shake from whey protein & blueberries. Add ENADA, Alpha Lipoic Acid, and L-glutamine powder. These are to help with cell energy. I am to continue to detox and dry brush my skin.
I did get the test results from June when I was last there. They had run a Western Blot test. I showed 2 bands positive IgG 60 & 35.
I also got copies of 7/29/05 lab results. My Babesia Microti was pos IgG Index 2.29 (pos is >. Also I tested positive for the HHV6 Mine was IgG pos at 4.67 and the range set is anything over .99 is positive. also pos was chlamydia pneumoniae 7/10/2005
Findings from my spec scan indicate cognitive dysfunction with mildly diminished perfusion in the cortices of the cerebral hemispheres bilaterally. This is most pronounced in the parietal and temporal lobes, left more so than right.
I have tested low in testetrone. Christie to me to by dHEA 25 mg and take once a day. This is to help with all womens hormones. And this is an over the counter drug.
She did mention the 60 day treatment they are under. I didn't get any abx refills from her since I had some at home, figured I'd be ok. When I left my bill was about 112. (no blood work - I'm going to my family Dr and getting them to draw the blood so maybe the insurance won't find on paying it.
Prayers to all you lyme friends out there. Hope today is finding you better.
That's a lot of information to get your head round.
The clinic is obviously doing the best it can for you, whilst working within the confines imposed upon it. I hope that it all works out.
I took DHEA years ago when my illness had been diagnosed as CFS. The doctor I still see was determined to find the cause, insisting that chronic fatigue was a symptom and not an illness. He managed to discover that my thyroid and adrenal glands were not working properly and he prescribed DHEA and other supplements.
Although it didn't cure me (the LD was still not diagnosed) it brought me back from the brink. Until that point, I felt like my whole body was slowly closing down and that I was slipping away, and I didn't really care.
You are so lucky to be able to buy DHEA over the counter, unless the rules have changed without my knowledge you can't do that here.
Wishing you the very best of luck with your new regime.
Thanks for sharing about your Jemsek visit. I was anxious to hear how you made out. What did she say will happen after the two month treatment plan? Are you going to go back? Do you have another appointment scheduled? How did you make out regarding the huge insurance bill they socked you with?
I just hung up the phone from talking with the insurance dept at the Jemsek Clinic. I ask them how they came up with the $4,000+ balance. The girl I spoke with couldn't answer the question and told me she would have to check into it. She wasn't sure my balance was correct. She just called me back and all but $167 was written off. The $167 was the charge for the day that I was informed of what was going on but still saw the PA.
This is an answer to my prayers. The load this has taken off is tremendous. I did make an appointment yesterday for a follow-up in 2 months. I have to say Dr Jemsek has went beyond what I expected. I admire him more than ever. I know this has been a hugh financial blow to him. His hands have been tied on treating all chronic lyme cases as myself. But I have the knowledge from the past couple months on orals and I do have some abx stockpiled. I think I can get thru the next few months on the meds I have.
Thank you to each one of you who said a prayer on my behalf. Prayers were answered. I know I still have lyme, but I also have options that I have learned about from this lyme board. If and when my orals run out, I'll decided what to turn to. I'm sure the Lord will guide me.
Phase II begins, cell tissue repair and cleanse. I just bought 5 of the 6 new supplements she told me to add. Couldn't find one of them.
Last edited by Pearlscale; 09-06-2006 at 12:22 PM.
Hello..I'm new to this board, but not new to Lyme or Jemsek. I've been on oral meds for 2 years. I just found out today about the insurance and future treatment issues.
I appreciate your information. I probably have enough meds for a few more months. The last time I tried to detox (about three months ago) I went six weeks without meds and then my immune system started to crash. I went back on meds and was OK again, except for the fatigue and occasional joint pain and headaches.
My next appointment is in November, and I'm nervous about what options I will have. Any reassuring information you have will be appreciated.
You'll be in my prayers. Please keep me in yours. Thanks
Welcome and I have to ask about your name.
I feel as though I have been fighting this all my life. 19 + years. I am trying hard to detox. Just did the dry brushing and detox bath tonight. Started my supplements. Christie did give me alot of info yesterday. I go back Oct 31. I have enough meds to continue till then. Maybe a couple months after that. But I don't think I can count on any more abx from them. Their hands are tied. She actually told me I probably knew enough to continue on my own if I had to. I am to go back on meds Mon but I am considering whether I can hold off another week.
They are a caring staff and what has happened to them isn't fair. But there is nothing we can do about it. I do worry about what will happen when my immune system starts to crash. I know I haven't won this battle and my immune system is just now starting to work again.
How long have you had lyme. I know the length of time affects the length of treatment. I know being on orals for almost 2 yrs and trying to come off and finding you couldn't. It had to be a blow. Major stressor.
Hang in there. We can struggle thru this together. I'm here if I can help. Everyone on this board is great. Willing to answer questions and encourage you when you need it. So many on here have helped me thru and I'm sure will be there for you.
And you will be in my prayers. Marsha
Last edited by Pearlscale; 09-06-2006 at 08:11 PM.
Hi Pearl......sounds like you had a productive visit....hope you are looking for another Doctor or thinking of other treatments to do before you run out of time...You don't want your immune system to go backwards....ONLY FORWARDS MY DEAR
I see you had a test done for chlamydia pneumoniae .....I am wondering if you have researched this bacteria? I also have this BACTERIA...and so from what I have learned does everyone else....this is the walking pneumonia bacteria that causes soooooo many other conditions...it is kind of like the lyme bacteria in the since it creates a cell around itself and reproduces and it is hard to kill....I was seeing a FIBROMYALGIA doctor that is going by Dr. Charles Strattons protocol in treating this bacteria....he has people do antibiotics and flagyl...and is curing people that have fibro...and some people I have read with diagnoises of M.S...alsheimers...cancer...
Check him out...just like lyme we shouldn't be closed minded to other things taht are keeping us from getting well....
Good to hear from you. Hope you are doing good.
Thanks for the Dr info. Will check into it. I think all the co-s are tough to get rid of. Also HHV6. Know anything much about it. I've looked at it some and it is tick related too. Not sure if these abx cover everything.
About the next step. I have Jernigan on my favorites screen. That is a definite possiblity. Want to use up the abx before I move to different protocol.
Maybe you should try the protocol before you run out of antibiotics. That's what I plan to do. I think that I will keep my stockpile of antibiotics as a reserve and go on Dr. Jernigan's treatment plan. That way in case it doesn't work for me, or a I have time I am desperately sick, I will always have them. I think psychologically this will be better for me, just knowing they are there in case I need them.
I, like you, am still mulling over all my possibilities, though. I want to start investigating Dr. Jernigan's website, and put him in my favorites, but it just seems so overwhelming. It is a whole new thing, and I don't know where to start. It's like I just finally got educated about meds and now I'm going to have to educate myself about this. I have wasted so much time, energy , money, and resources already, and I hate to have to do more, but I have to do what I have to do.
Good Day Pearl.....I've been sitting here trying to go through my 20 years of paper work.... I have more info on the C.P. bacteria...I was looking for the regimn of antibiotics to take for that...When I was tested for it the doctor told me that it is worse than lyme...I guess mainly cause we spread it just by sneezing...this is what our sweet BetterDaysForMe is dealing with beings she has a bad case of pneumoniae....When I was saying we all have it I meant EVERYONE in world...when we go into the doctor for a 10 day course of antibiotics for bronchitis...respirotory coughs...and a bunch of other conditions it is most likely this bacteria...in most cases it goes back into remission or it continues to spread into the joints and tissue ...like the lyme bacteria...but because doctors ...like lyme...have no clue they think that once a person stops coughing or their symptoms clear up then they are home free....NOT SO!!! Later it comes to where people are hurting all over...have alshiermers...M.S. some cancer cases I read about...and alot of people saying they have Fibromyalgia....but most doctors don't beileive that a little bacteria can cause all of this....
So from what I have read Dr. Charles Stratton...forget where he is...he and other Doctors...have been doing research...and a very FEW are following this protocol........but people have to be on them MONTHS OR YEARS!!!
My sister has been diagnoised with F.M. and boy she and my Mom both have this HORRIBLE Seal sounding cough....okay Mom was diagnoised with C.O.P.D.....which this bacteria can cause that also....BUT DO THEY LISTEN TO ME AND I SAY I FOUND A DOCTOR THAT MOST LIKELY CAN HELP!!!! No I am just the nut case of the family ...so they stay living with it...drives me nuts...the doctor that does this treatment in Sacramento ...he also had lung problems and that is mainly how he got into this protocol...he is on the treatment also....
The HHV6 I'm sure you have researched...there is nothing my dear friend that you really can do for this...it is a herpe virus...most likely from when you were a kid...we all have herpe virus's in our system....I know when my immune system broke down...boy did I ever have huge break outs on my rump.....there are all types as you now of herpe virus's....from what I have also heard they are just lying dormaiant in our system until the big break down of the immune systems or nerves.....yours wil I am thinking calm down when you bring your immune system and your body back up to par....
I also had the CMV, mono....all of these things just seem to pop up on test and we seem to keep comeing down with them when our bodies break down...Epstein barr is another good one....yuck!!!!
So this is all a mess for everyone...but boy what a learning experience it has been allllll the way around....
I am thinking about going back to the Doctor in Sacramento...I liked the Dr. J's protocol...but I think I still might be dealing with the other C.P. bacteria...it just all becomes such a guessing game...I just know that I get to where it is hard to breathe...rashes...and still dealing with my Full Moon head problems....so 3 weeks out of the month this last month were wonderful!!!
Whew okay coffee break....
Are there any other lyme doctors in your area? Even with a positive your doctor can not still treat patients??? Thought if you had clinical symptoms now the CDC says it is okay for treatment.... ...who ever judge against this doctor...says okay there are sick people out there but you can't treat them.... SHOULD BE A LAW AGAINST THAT!!!!!
Thanks for responding. My name..well, I'm a UF grad [ REMOVED ] so when I had to come up with a name, it was all I could think of.
Sounds like you've had quite a journey. I was diagnosed with Lyme, Rocky Mnt Spotted Fever and babesia in July of 2004. I was one of the lucky ones because my diagnosis took only 9 days. That's probably because of the the Rocky Mnt. I was back in forth from my PCP and the emergency room for those 9 days, and my PCP was wise enough to say he didn't know what it was and figured it was infectious disease and referred me to Jemsek.
I never saw a tick, but did get a rash from head to toe after taking leviquin for the first diagnosis - which I believe the PCP thought it was menegitious at first. Then we thought an allergic reaction to the meds. Then the fever went throughthe roof and I ended up in the emergency room where the Rocky Mnt was diagnosed. But then those labs came back negative and I ended up with Jemsek. I did get positive labs then.
Any way I've pulsed on orals pretty much the whole time - well I did 400 mg of doxy per day for 60 days at first, then started pulsing on various meds. Haven't done IV yet. That was supposed to happen at the next visit in Nov. We were going to try 30 days, because that's what the insurance would cover. But my how things have changed!
I've been pretty lucky throughout this so far. I talked with one of the nurses by phone yesterday and I know Jemsek is working hard to treat us the best he can. At least my PCP is good. We'll see what happens. Keep me posted with any news you here about Dr. J. Thanks
Last edited by moderator2; 09-07-2006 at 06:11 PM.
I am having a very difficult time accepting the stipulations which have been placed on Dr. J's clinic. It is unbelieveable that this can be happening and that a few individuals who are far from Lyme experts can make a decision that affects so many lives and wellbeing.
We cannot just hope that things work out - there must be action on the part of every lyme patient. I know it is hard when we feel so horrible but on the days that are decent, if you have decent days, then you must take some time to do even one small thing that could contribute to educating someone in a position to do something about this.
I have a hard time even thinking about what has happened because my anger and disbelief at times seem more than I can bare...but I will never give up on enlightening those that are obviously in the dark.