posted
Sorry for a potential re-post. I think I put this in the wrong place initially
ABOUT ME: I am a 45 year old housewife, farmer & homeschooling mom. My life started to change about 3 years ago when my knees started hurting after a run.
I was extremely active. Starting to compete in triathlons, hiking and planning to hike Whitney that summer.
I made our 2 1/2 acres in CA into a small family farm. Raising and butchering our own meat and maintaining a 10,000 sq ft organic garden.
I home schooled our youngest 2 kids. We have 4.
As many of you have experienced...most of that is gone now.
Slowly, my health has deteriorated. Starting with my knees (one of which is ready for knee replacement now), and continuing with All the classic symptoms of chronic/late stage Lyme.
I sought treatment from my Priamary Care Physician as they came up- ~Lethargy & complete fatigue. ~Serious Brain Fog. ~Heart Palpataions ~Depression ~Tinitus ~Nerve Pain ~Mystery pains
He ran 3 blood panels over the course of 2 years at my urging that I was not "right" but never included Lyme.
I was healthy according to the tests. A few minor things out of balance but "nothing to worry about"
After changing to more expensive insurance so I could go see "better" doctors, I was left with the impression that these new docs thought I was making stuff up.
After about a year of the "better" docs and numerous tests, procedures and 2 surgeries on my knees with no answers I was told there was nothing more they could do for me except to send me to pain management or I could get a 2nd opinion.
So, desperate, I went back to my Primary Care Physician and pleaded with him that something was wrong.
How could someone as healthy, happy and active go from that to the run down, depressed, pain stricken, unable to recall words, unable to walk sometimes, person that I have become?
How could a 42 year old persons knees go from healthy to not being able to walk and needing knee replacement in less than 3 years time???
Why was no one as concerned as I was?
So, he listened. Wow! I begged him to run every test my "better" (read expensive) insurance would pay for.
So....He ran the Lyme test and BINGO!!!
Next time I see him I want to ask him what made him decide to run it.
Most questions are now answered. Nice to finally know but I am a little numb with what comes next.
He is not LL and is starting me on 100mg doxycycline for 30 days. I guess it a place to start but I am now very anxious to find a LLMD to attack this with me.
All he has said is that we will re-test for Lyme in 30 days and if it's not gone (I am smirking) he will send me to an infection disease specialist.
I know my story is soooo common here as I read all of yours.
I am in mourning.....for the person I was just a short time ago. I just found out 3 days ago so I am giving myself time to process and trying to not be to hard on myself.
I am also in the process of telling my family and trying to educate them. It's not so straight forward to explain.
Thanks for reading. I would love any feedback, opinions and help you can offer as I feel pretty alone right now.
[Wink]
Posts: 12 | From SoCal | Registered: Mar 2016
| IP: Logged |
I am getting ready to step out the door, but I'll move this to Medical Questions for you so you will get the proper feedback on your medical questions.
Glad you found us!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
The meds he is giving you is a start while you find someone who is lyme literate. Contact support groups for this information. See that line in green menu box on left side of this page. Fortunately you are in a state with a number of lyme docs, relatively speaking. Some states have none. Most do not take insurance, but if you have PPO type, you can submit claims and get some reimbursement.
Don't bother with the retesting in 30 days, as this is useless, and so will the ID specialist he will send you to. Enough of your time and money have been wasted already.
You are fortunate to have gotten a positive test. Many cases are not caught with these tests. They are just not good enough. Make sure you get copies of all the testing results for your own files. If anyone asks why just tell them you keep your own personal file.
Best not to tell them your plans from here on. Their input will be useless, and they might even discourage further efforts on your part elsewhere.
P.S. Take doxy with a meal, don't lay down for at least an hour afterwards. Buy some good probiotics and take 2 hours after every doxy dose. Would be good to cut back on sugar and carbs because taking antibiotics is going to produce yeast unless you are careful.
Since you have had no treatment at all and are late stage, you might have a herxheimer reaction even on a low dose of doxy like you were prescribed. Be prepared for this or you might think it is an adverse drug reaction.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Since the test can only prove you've been exposed to Lyme, not whether it's active, it's useless to retest in 30 days.
It sounds like classic chronic Lyme. Sorry you're dealing with it, but glad you finally know what you're dealing with.
Since you have 30 days of meds, it sounds like you have 30 days to decide how you want to go about treating this. Read on the site, it has lots of good information, just remember, everyone here is a patient like you (or a past Lyme patient who has gotten better), so everyone's opinions will differ.
I hope you feel better soon. It would be nice to think that the low dosage of doxy that you're on would work .... but unfortunately, it's unlikely. He's just following the IDSA guidelines. You might want to go to ILADS website to see their guidelines. Maybe your doctor would cooperate with a higher dosage if you showed him a copy.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Doxy creates more round bodies...http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/ its going to be all greek at first but watch under our skin on hulu and justinandcristie on u toob..
.there is a lot of snake oil and good medicine and ama will tell you the good medicine is snake oil...borreliosis it is pleomorphic ,3,types ,slow growing ,biofilm building ,and i have seen it come out of a red blood cell.
.it never travels alone ..there are coinfections ,erlichia ,babseia ,bartonella ,rmsf ,cpn ,fl1952 and viruses .turns your body to a torture chamber " there is no silver bullet no pancea no set way for everyone...i have found good success stories here ..and know 4 persons here who have gotten better with treatment.
Do be greatful you tested positive .i took short course abx unknowingl . .blood boiled then cloud ,chest pain vertigo etc .etc.took 22 ducks and and id doc said mine was a false positive .
Buhner book is informative, schaller is interesting ,dr h and pam weintrab have some but there is great u toob this guy cover a lot https://www.youtube.com/watch?v=jdTLXPFR3T8
this nurse who spotted it before docs said to me you are in a fight for your life! I wish i had heeded her warning... inform yourself ,question everything and pm if you need support..
This sight is a wealth of knowledge, vets here know about more fuctional medicine than most docs..from mthfr to histamines to heavy metals to mold...
You will become a guinea pig, watch your mind ,nothing is real and its all too surreal at times..bless you as you begin your journey
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
posted
Thanks everyone for your responses. It was nice waking up this morning to your words.
Wow!!! Not liking what I am reading in the link you shared, bluelyme. Sounds like Doxy is not the way to go if it actually increases the round body forms about twofold. Sounds like a relapse in the making to me.
I know everyone is different and I will continue to read, watch and learn over the coming days, weeks, and months...but what are your thoughts on a beginning round of antibiotics that I may be able to talk my PCP into while I wait to see a LLMD?
I will take your opinions into consideration and make an informed choice but I don't feel right about the Doxy.
Oh, another question...is there a common timeframe that I might expect to see a Herxheimer reaction?
My PCP actually said that I might actually feel really bad in a couple weeks after being on the doxy but didn't explain why. Now I know why.
I have been reading and watching and I am putting together a list of supplements to start taking. A lot of great info on that here, Thanks.
I am interested in MMS but have not looked into it yet. It sounds kinda like a miracle or too good to be true. How many of you are using it?
I am a bit overwhelmed but reminding myself to be gentle and patient. It's been such a long journey already and I am realizing that I really am just truly beginning.
I am also discovering that I will be alone for a lot of it...sure, My husband will be supportive and my kids and extended family are here but I am finding that they really don't understand.
Thanks for reading, KC
Posts: 12 | From SoCal | Registered: Mar 2016
| IP: Logged |
posted
Just read the entire 37 page BURRASCANO Report. I have decided to double the dose of Doxy I am on. I will be going from 100mg 2X a day to 200 mg 2X a day. Guess I am a rebel to do this without my PCP consent but he is on vacation for the next 2 weeks. LOL
I will take my probiotics 2 hours after each dose and follow other "compliance" recommendations.
In the mean time, I have a call into my PCP's partner in the office to see if he will start me on IV ABX- not gonna hold my breath.
Any opinions???
Posts: 12 | From SoCal | Registered: Mar 2016
| IP: Logged |
posted
Many people take 200mg doxy 2x/day. 100mg doxy is considered too low.
Herxing happens when it happens. I backed down in med level when it happened to me.
It would be unusual for a PCP to do IV abx - usually a Lyme doctor does that. Also, after an eval of whether you need to go to that level or whether you'll treat with orals first.
Don't worry about others understanding right now! You need to educate yourself first.
Either people are willing to start learning about it themself, or they will need some interacting with. It's easiest to do the latter when you know something!
Knowing something now, I generally give people a scientific understanding really quickly, like it's a bacterial infection, the bacteria looks like this, it's similar to what causes syphilis,
it gets into the brain quickly and causes whole systems upset, it can get into tissues anywhere and inflame them, we need to understand how it operates to understand how we treat, have patience with me! etc.
MMS works for some and not for others. At this early stage, I don't think you need to be experimenting with it. More like do basic treatment, which lands in three areas - kill/deter the organisms, detox and fortify the body. The Burrascano guidelines are good for that, plus discussion and archived links here.
I call it going to Lyme school! It's a learning process...
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
The thing about round bodies is that they are an alternate form, designed to withstand hostile environments. This can happen with other drugs too, not just doxy.
And what lyme docs frequently do is combine drugs that have a different mechanism of action to combat this shape shifting on the part of the bacteria.
So, short term there is really no harm in going on doxy by itself until you can get into see a lyme doc. Forget about your PCP's partner. No way will he do IV. And you should wait to see what happens with orals first, and what a lyme literate doc will be doing.
But remember that your pills are going to run out sooner if you double up on them and may not last long enough for you to get in to see a lyme specialist.
Typically they can have quite a long wait time. They are busy, with big patient loads. Your first order of business is locate a lyme doc and make an appointment. Pronto.
Don't mess around with questionable alternative methods at this point. You are not going to know enough to sort out what has real merit. Keep in mind that people are trying all sorts of stuff, and you should not blindly follow them.
...........................................
(breaking up the post for easier reading for many here)
[ 03-04-2016, 02:47 AM: Message edited by: Robin123 ]
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Sounds like solid advice, POPPY. I will continue to double my dose of doxy and hope my PCP will refill the prescription when he returns from vacation in 2 weeks.
I have an appointment with Dr K an LLMD in San Diego mid-april so I will have about 6 weeks to do my homework.
I will concentrate on getting my supplements in order, cleaning up my diet, & taking my probiotics and eating lots of fermented food. Dr. BURRASCANO has it all layed out nicely in his report.
So far you all have made a huge difference in the first few days of my diagnosis. I feel like I am not so alone so Thank you for that.
Posts: 12 | From SoCal | Registered: Mar 2016
| IP: Logged |
posted
Watch your reaction to the fermented food. Some of us are histamine intolerant (me, for one). Fermented foods are high in histamine, so though they will populate the gut with good bacteria, they can make a person who can't process histamine feel worse.
I'm not saying not to eat them. Just watch. If you feel worse on them, maybe try taking probiotics instead (I take one made for people who are histamine intolerant). If you feel fine, go for it. Just take note of how you feel with each thing you're doing. Sometimes we blame the disease and it's something else entirely making us feel bad.
Every person is different. That's what makes this so complicated!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| 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)
Printer-friendly view of this topic