posted
Hi all, I would appreciate any input about anything that seems relevant to my situation. I am scared, confuse and am just trying to keep it together while feeling that a major window of opportunity to treat is quickly escaping my grasp! Here is my story so far.
I, with my fingers, removed a (not yet engorged) tick the morning of Sept 9th. I live in an endemic area.
I went that day to my PCP. Ordered tests and tick identification. I asked about Lyme... he gave me a script for 10 days Doxy (2xs a day 100mg) and told me to take it if I wanted to but that Lyme was rare. I did some research later that night.
The limited first research I did focused mainly on whether I should still be nursing my son. My verdict...no. That night's bedtime nursing session was our last [Frown]
I didn't start the Doxy. I at that point hadn't researched nearly as much as I have by now and didn't realize the importance of treating ASAP if in an ndemic area after improper removal.
Within 48 hours the bite turned from a very small pink dot to a slightly swollen red lump. The next couple of days the bite became itchy and had a fluid blister at the center (like ant bites get). I chalked it up to allergic reaction.
The next few days it became red and slightly swollen around it on the left side of the bite. The redness was less than 3/4 of an inch across.
I also noticed a couple episodes of being chilled...not so much having the chills as I read about wit Lyme (assuming they are meant to be flu like whole body chills)...mine were slight and only some goosebumps. Also, soon noticed fingers on my left had seemed "slow". I got a little worried and I started the Doxy. This was on day 8 after bite. The redness around the bite had not gotten bigger, but was not getting better either.
Saw my PCP again the next day. Test results negative (I knew testing the day of bite was useless). Tick was identified as a Lone Star Tick and Doc said couldn't have given me Lyme (I also knew this is speculated to be incorrect). Doc said come back if I had joint pain and we could test again in 6 months...pshhh. Interestingly, when my temp was taken...it was 99 degrees when I normally run a little cold...so I had a mild fever.
Day 11 post bite (day 2 on Doxy) I start feeling very ill. Trouble sleeping, pressure in my head, super tired, blurry vision, multiple pre-syncope episodes, became depressed (having weird thoughts about if I loved my son as much as I used to!), and absolutely NO appetite (lost 5 lbs in the ensuing week). Appetite hadn't been good up 'til that point with the stress of worrying about possible Lyme...but after the Doxy it completely disappeared.
Soon found references to Herxing and Intercranial pressure (Doxy side effect). Having absolutely no idea if it was all caused by low blood sugar, side effects, Herxing, or what...I made an appointment with an LLMD and called my PCP for immediate advice. I stopped the Doxy as sugested by my PCP on day 8 for fear it was side effects and so I could hopefully eat and stop practically passing out all day.
The LLMD I scheduled with was a collegue in a group of a Dr. who was recommended through the lyme association's referral process. I took her appt cause it was sooner than the referred doc and I assumed being in the same practice it was fine. Looked the Dr. up and found out she was VERY new to the practice, a rheumi, and had zero references or reviews on sites like VItals.com referencing Lyme. This caused me to be suspicious.
I called back and asked about her credentials...was assured that although new to their group, she has been treating Lyme in the past and that she was ILADS. At this point I knew I still needed help determining if I needed meds and if I did need them...I needed them FAST so I kept the appt instead of starting my search over and adding more time. The group she belongs to is Dr. S's in North VA. (anyone go there or have advice about them?)
At the appt at times she seemed to know her stuff. At times it kind of seemed like she was trying to scare me. She also parroted stuff from printed out papers and after leaving and coming back into the room kept referencing that "we" were going to recommend this (I believe she was conferring with Dr. S about treatment).
After explaining my concerns with the effects felt after taking Doxy, I was prescribed Minocycline in a graduated dosage schedul(ending with 100mg 2xs a day after 1 week of ramping up). I asked about a cyst buster since my research led me to believe that the dosage of Doxy I was on had probably not killed any Lyme and possibly caused cysts...she said it wasn't necessary until I was chronic :/ (didn't think that sounded right...don't want to get to chronic!). I also asked about Mino being as effective/appropriate as Doxy and was assured it was.
Later research has now informed me that 200mg/day of Mino is basically the same as 200mg/ Doxy and that I am STILL NOT KILLING THEM! And still possibly making the situation worse in regards to cysts.
My appt was Fri, so I had to wait until Mon (this past Mon.) to leave a message about this concern. Still didn't get a call back today so I will have to call back again tomorrow.
Meanwhile, I am fearful of stopping the meds as Monday was exactly 3 weeks post bite and I know that even starting treatment at 4 weeks post infection greatly decreases the odds that it can be eradicated in the early stage. However, I don't want to be making things worse in re to cysts.
I want to ask her to try me back on Doxy so I can get to a high enough dose to actually kill them (you can't go higher than what I'm getting to on MIno)...and just hoping that the effects I had were just Herxing.
Am I wrong about the Mino? I currently am at 100mg/day in the ramp up dosage schedule. I also feel like I should have just started out at 200mg/day and that this ramping up stuff is only wasting the last good week I have left at fighting this stuff early.
Help. Please. Feeling desperate here.
Sorry for being so long. I'm sure you guys can relate to the stress and anxiety and just wanting to know what to do.
Posts: 34 | From VA | Registered: Oct 2013
| IP: Logged |
posted
Do you have the left over doxy ? If do, I would take it at 400 mg a day . How did you feel after stopping the doxy ? Did the heD pressure etc go away?
Posts: 574 | From Out there somewhere | Registered: Jul 2010
| IP: Logged |
posted
Because you had such a quick symptom response to the bite you probably have a co-infection as well. Take doxy 400 a day and anything you can get your hands on. Go to a walk in clinic and say you were just bite /removed a tick yesterday and get some scripts. In the meantime make an appt with a good LLMD. If you have a long wait time continue with your current doctor to stay on abx. Do not breast fead your son. You are still early in the window of being able to recover. It will take months though not weeks.
Go to the seeking doctor forum and someone in your area will send you dr names. You need to give your location in the topic headline.
I know it is hard not to worry, but if you get adequate treatment for long enough you will be fine. You are smart enough to know to come here early on
Posts: 160 | From somewhere | Registered: May 2010
| IP: Logged |
posted
I thought that about the bite being so irritated too. The LLMD I went to was going to use Labcorps so I asked if we could skip the tests since they probably wouldn't be accurate anyway. Maybe that was another indication that she wasn't a good one.
I am also a little weary of starting the Doxy on my own while the Mino is still in my system. Before this, I have not taken much meds and try not to take them if I don't have to...so I'm nervous about having too much ABX for my system to handle...since I know that it takes days for them to leave your system completely.
Posts: 34 | From VA | Registered: Oct 2013
| IP: Logged |
posted
mino is actually a better drug for some, take 300 mg as it hits the CNS better than doxy
Posts: 532 | From Texas | Registered: Oct 2004
| IP: Logged |
posted
I had read that...and so many other conflicting ideas about Mino...I just don't know what to believe about it cause I couldn't find as much research involving it as Doxy.
I did read that most people can't tolerate it in the dosage needed to be effective (the 300mg). I am already having some dizzyness off of 100mg a day that I'm on right now.
Maybe I just can't tolerate oral drugs. IDK.
Posts: 34 | From VA | Registered: Oct 2013
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
First off, drop the first doc, he has no idea what he's talking about. I can't believe he even did the testing that early. No test is even necessary for Lyme if you have the rash.
Second, it's going to okay. The acute stage is the first 2 months. You are well within that range.
Last year I was in a very similar situation. My PCP diagnosed me with an erythema migrans rash.
It was swollen and itchy like you described.
I started antibiotics while having the rash. I had problems with antibiotics too.
I was on a light dose of doxy for the first month. Some of these antibiotics you need to start slowly on and ramp up.
It's good that your doc is starting you slow on the minocycline. It caused me horribly vertigo and I did have to stop it after a couple weeks.
I was able to get Lyme to go into remission without taking a cyst buster. It's different for everyone. Actually taking a cyst buster at this point might make your symptoms worse by flooding your body with die-off.
This isn't a race to the finish line, it's a marathon and you have to pace yourself.
Make sure you're doing detox support and taking probiotics away from the antibiotics.
Take care and you WILL get through this.
It's very scary at first, you are seriously getting this at the best time you can. You will be fine. It just might take awhile to find the combo of antibiotics that work for you.
I went through about 7 of them and was allergic to all except 2. That's just the way this illness goes. You hit road bumps but you are still moving forward.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
Thanks for the reply Judie. I ddid drop the first doc...well, haven't been back for anything Lyme related. He is my PCP...my first LLMD doesn't seem to be cutting it either though.
Also, I guess I am so worked up cause I am hoping not to go into remission but to KILL it off.
That is the window I believe that is closing for me. Maybe I'm wrong and that window has already closed. I hope not.
Right now, I am so desperate to not have this become chronic and not have to deal with remissions that I would gladly endure whatever side effects/herxing I had to.
Sorry you had such problems with antibiotics too.
I am doing what I was told by the LLMD as far as eating better and taking a special probiotics that she recommended. I am also supposed to order some kind of "brain nerve cleanse" Pinella stuff. Haven't gotten to ordering that one yet though.
I have to read more on other detoxing info...I'm just trying to get my meds straightened out first.
Posts: 34 | From VA | Registered: Oct 2013
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Gosh, you really remind of where I was a year ago. I really didn't want this to be chronic.
There's really no test to say that it's "cured" but you are seriously in the best position for that.
Just keep reminding yourself that you are making very good decision for yourself considering the information available.
I went to 3 LLMDs the first few months and picked the one that worked best for me (I kept getting antibiotics with each one so I was always taking something).
Keep in mind, I caught this early and had to treat for 6 months.
I saw two LLMDs after this and both thought none of my health problems at that point had to do with Lyme.
There will also be recovery time for the antibiotics too. They will leave you weak even if you clobber the Lyme away and you will need a to rebuild.
I spent the good part of this year rebuilding my body after the antibiotics.
I then got reinfected a month ago.
Be sure to protect yourself from reinfection. You can still get another bite and get a new host of co-infections.
Another thing I had my doc do was test for all the items on Stanfords CFS test requisition sheet.
There are several infections on there that don't have anything to do with a tick bite that got stirred up because my immune system was so down.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
For inspiration, my neighbor got infected with Lyme. He had the rash and everything.
He didn't treat for 8 MONTHS! It wasn't until he had heart palpitations that he saw his regular ol' doc.
He only took amoxicillin for awhile, no big combos or anything.
It's been a few years and he's been symptom free since then. He consideres himself cured. He also says he has a really good immune system.
For everyone it's different. My immune system is crap and had 11 co-infections last year. That's why I had to treat for 6 months.
By the way, I looked up Pinella. That appears to be a detox formula and will help get you through herxing and bad reactions to antibiotics.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
Be sure to take those probiotics at least 2 hours away from any antibiotics or the abx will kill the good bacteria. (at least you are giving it a fighting chance)
I agree with Judie.. with proper treatment from here on out you should be able to make a full recovery.
Get to a walk-in clinic or whatever you have to do to get more meds!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
It's good to hear the more positive stories of those who don't need abx for what seems like forever for most that post in these kinds of forums.
Posts: 34 | From VA | Registered: Oct 2013
| IP: Logged |
posted
I just want to reiterate how important it is to be tested for co- infections. We had babesia and did not test poditive for it until. 9 months later after the bite. Watch you symptoms if you do not have 2 full months of no symptoms then go back an be tested for babesia, bartonella , HGA, mycoplasma.
Stay on high dose abx, and after a month or so pulse in Tindamax as a cyst buster. When you take only dozy or mino it drives the spirochete into the cyst firm. Look up Eva Sapi and her latest research.
When we had this many years ago we did only zith and flagyl for 6 months. We caught it early.
Posts: 160 | From somewhere | Registered: May 2010
| IP: Logged |
posted
I got a recommendation for a Dr. who is an LLMD at a local clinic but isn't an expert LLMD and I saw her this morning. I was hoping she would switch me to Doxy. I just got back from the appt and she said stay on the Mino So still no Doxy.
But she is testing me through Igenex...for coinfections too. So I guess that is some good news.
Bad news is I know about the cyst stuff (I've read Dr. Sapi's stuff), but I can't do anything about it cause I can't get my hands on anything but the Mino I have right now.
Maybe I need to try another clinic and like KH111 said...just not be upfront about everything. I laid it all out for this Dr. this morning hoping she would disagree with the course of treatment I was on. Maybe I should just go in like it just happened and lie. IDK.
Posts: 34 | From VA | Registered: Oct 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
So still no Doxy. 
Printer-friendly view of this topic