Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Hi Everyone,
I was just diagnosed with Lyme disease a week ago. I had a bulls-eye rash and went to my doc. It looked exactly like her clinical picture for Erythema Chronicum Migrans.
She put me on 21 says of Doxycycline, 200mg per day.
I've been having horrible hip pain and trouble walking for about 2 months.
To top it off, I've already been disabled for several years with MCS, chronic fatigue and several other problems. I don't think I can handle Lyme on top of that. I'm already so limited and very disabled.
I've also been having a bad Herx reaction. My body feels terrible along with itching all over.
One doc told me to lower the dose of Doxy to 100mg per day because of the Herx. I'm scared to do that. It's obviously doing "something" and it's not an allergic reaction.
I had another doc a few months ago suspect I had mycoplasma and wanted me to try Doxycycline. She suspects the Herx is so bad from that.
Is 21 days of Doxycycine at 200mg per/day enough to wipe this all out? My walking is so bad and I'm so tired.
I need some hope.
Posts: 2839 | From California | Registered: Jul 2012
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You need an LLMD. I suspect the rash was, as in my case, not when you were infected. I've had lyme at least 10 years (my daughter who is 10 has congenital lyme), and I had the first rash - perfect bulls eyes - one year ago today.
I suspect your chronic fatigue and MCS is, in fact, lyme. The good news is, that if this is the case, you can be treated and get well!!
I don't understand why the rashes can happen so long after infection, I hope somebody reading can explain this!
Posts: 161 | From vancouver island | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome. Sorry, of course not just for the illness that brings you here but for the not-so-great care you've received from your doctor.
Indeed, you are on too low of a dose. But, in order to be able to tolerate a full dose, "liver support" needs to be on board.
The herbal supplement, Milk Thistle is the most common but take hours away from the Rx.
Glad to see you've posted in "Seeking a Doctor" as you will need a LLMD. At least now, though, you've started.
I can't write more now but there is a lot of good detail in these next two threads. Good luck.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many LLMDs also use what is called a "cyst-buster" Rx such as Flagyl:
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
So sorry you have to be here.
You did find a good place though..
It is scary and hard..your other symptom's go right along with Lyme and co-infections.
So you may have been fighting this for a while and not know it/
Big thing ,first,,,NO STEROIDS,,shots ,sprays, pills,etc.. It is total gas on flame and makes the whole thing hard to treat.
Is it a LL MD Lyme Literate Doctor???? Doxy makes me itch a bit ,also when I'm hitting Babs/Bart...I tend to itch a bit.
We keep a children's bottle of Benadryl close by and adult tablets in case.
This was not caught in the first week,,you'll need more ABX'S...
Others will follow on that/
At the top of forum is the Dr B protocol..that;s your guide..
Don't. know what your finances are but It helped me to get a couple of books to refer to,
Eat a bit with the Doxy...applesauce, good flavor baby food,, Coats gut a bit..
Set an appt with a LLMD ASAP !!!!!!!!!! nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- [I see others replied with the same thought while I was typing this]
Not sure how to tell you this but it may be a relief of sorts because, although you may have a new case of lyme, you may well have had lyme for a long time already.
Many with MCS & chronic fatigue do - or another kind of chronic "stealth" infection. The good news is that a good LLMD can help sort out what exactly is the root of your symptoms.
While you feel worse right now, some of that could be from the herxheimer reaction.
Liver support is addressed in Burrascano's Nutritional supplement section in the set above. That will make all the difference in how well you'll be able to tolerate treatment.
Main helpers: Milk Thistle; Magnesium; Fish Oil; Ashwaganda (or other adrenal support herbs).
Many do well with a gluten-free diet.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are several LLMDs in California. And this is a top lyme advocacy and education group in your state:
On-line support for those in California -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Thank you so much and for posting so quickly everyone! It means so much to me. I'm still processing all the posts, but I want to respond to each one if I can (it might take me awhile so please be patient).
I just saw a regular Internal Medicine doctor for general stuff like a physical therapy referral since my knees, wrist and hip hurt. I just happened to have had the rash at the time.
I have a big, swollen lymph node in my hip that hurts and she says if it's still there in my follow-up, she wants to do a biopsy. I've never had one before (I'm pretty sure it will be there, I've had these lymph nodes a long time).
What stands out to me is that I've had no tick bite that I can recall. I've had some minor mosquito bites (which I thought this was at first).
A friend suggested I watch Under Our Skin. Some of the ways people walk in it is where I can see myself going. I'm so scared.
I did have a massive toxic exposure and poisoning over 10 years which resulted in the chemical sensitivity according to the docs (lots of body rashes, swelling, fatigue, reactive airways disease, too many things to list...). My IgE levels are through the roof. If I'm not having a huge rash, the docs think I'm normal, then they test my IgE and take me more seriously.
I'm not on any medications except Doxycycline. Steroids are terrible. I got permanent eye damage from them (I was given them for the rashes from the toxic exposure). I had perfect vision before this.
Here are some more questions:
Can Lyme effect IgE levels?
What's the longest time after being infected can a bulls-eye rash show up (since it took 9 years for tickle)?
Are all LLMDs expensive? I'm already on Medicare and can't afford much.
For the biopsy of the lymph node on my hip: Is there a short recovery time? Will it show Lyme?
Posts: 2839 | From California | Registered: Jul 2012
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posted
Manybites, why not do a biopsy. Does it aggravate Bart?
Judie, yes it can be expensive for sure. Many of us can't afford it and treat ourselves, but it is hard and requires a ton of research.
Keebler's started you off with some good information on the pages she's linked to.
Curing lyme, or putting it into remission, involves a holistic approach. Diet, detoxing, medicine (herbal or allopathic or a combination - combination seems to be the best approach).
Stay in touch, ask any questions you have, we're all in this together!
And thank your lucky stars you did get a bullseye rash! I don't know where I would be now if I didn't get one. The rash gave me the certainty that I had been infected, and is what has carried me past nay-saying doctors and onto the road to recovery.
Posts: 161 | From vancouver island | Registered: Feb 2012
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posted
And I'm not a doctor, just a fellow lyme sufferer, but I have to say that supplements are definitely needed.
Magnesium is the top one for sore muscles and muscle twitches. Lyme patients are LOW on magnesium. Taking magnesium alone helped me with a lot of my symptoms before any treatment. Research the best form of supplements, because it escapes me now.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Welcome to Lymenet. You've come to the best spot to find info on lyme. People on this blog are kind enough to share their experiences and opinions, which I have found invaluable.
Lyme is a whole other world that people who don't have it have no clue about. I suggest you get the book: Cure Unknown. It explains so much and is a very good read.
Also, google Under Our Skin, Hulu and it will pull up the documentary. It's an award winning documentary for a reason (really good). But keep in mind that you are seeing the worst of the worst on this documentary. Lyme left untreated can lead to the same situations.
It is vitally important for you to find an ILADS doc (International Lyme and Associated Diseases Society). These LLMDs (lyme literate MDs, or even LLNPs, DOs, etc) are cutting edge when it comes to lyme. www.ilads.org. IMO, with ANYONE else, you are wasting your time and opportunity to get well.
I never thought I would try alternative medicine. But now I know better. Keep an open mind. You'll be glad you did.
When I finally figured out that I had lyme, I scanned this board and read everything I could about it. Peoples' experiences and info here are basically free clinical trials. I am so thankful that people open up and share.
There is a link under Medical Questions about people who have had success with lyme. It's encouraging to read from time to time.
Everyone here is a pioneer when it comes to lyme. Try not to get overwhelmed. I say that, but I remember that I did (ha ha). Just hang in there and know you have support. We've all been there.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Starting out with a lower dose of doxy is not really such a bad idea for someone who has apparently had tickborne diseases for a long time. In fact, some doctors ramp up meds for new patients with longstanding disease in order to avoid a bad herx. So don't worry that you aren't on the optimum dose. But do find a lyme doc quickly. A few take medicare.
And be sure to take a probiotic two hours after every dose of doxycycline. And stay out of the sun. Don't lay down for an hour after your pill. Take it with food if it upsets your stomach.
Posts: 2888 | From USA | Registered: Mar 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You can also go to www.lymediseaseassociation.org and click on the ILADS box to find an ILADS specialist. They will email you some names.
Then you can do a search on their backgrounds. You may have to travel out of state to find a really good one (worth it).
Also, ask to be put on their cancellation list. I was able to be seen by an ILADS doc in three days after calling his office. I didn't end up staying with this doc, but was grateful for the treatment he provided me at that time.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Judie, It very well could be most of your other problems are directly related to Lyme [& related borrelia infections]. Now that you are diagnosed, it is *CRUCIAL* you find a Lyme literate M.D. ("LLMD") who can start treating you PROPERLY. Believe me & all of us here when I tell you 100 mg twice a day for 21 days, is not *nearly* enough to assure that this "new (current rash) infection" is permanently quashed. It might just temporarily clear your new symptoms & rash. A relapse after insufficient treatment seems to be the rule rather thann the exception.
Most Lyme docs (see ilads.org) recommend antibiotics for 4 to 6 WEEKS for EARLY stage Lyme, though it sounds as if you might very well have been infected prior to this, so you should be evaluated for the 'disseminated' or late stage form by a knowledgable physician.
Be glad you are "reacting" to the doxycycline. Don't cut down unless absolutely neccessary. It means the bugs are being "hit" by the medicine, BUT many of them can- & DO- simply convert in form to a passive 'spheroblast' or "L-form" (that has no cell wall, per se) to avoid annihilation ("lysing" of the bacteria). This is why you NEED to be on a "cyst-buster" likle Flagl to tackle the other main form of Lyme.
Much to learn & it may be a long road, but you *will* get better, quite possibly better than you've felt in Many Years. ;-) Good Luck!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Gosh, thank you so much for the helpful information.
Any advice on hip pain????
My hip pain was OUT OF CONTROL when I woke up this morning. I could barely walk or even roll over on my bed without sharp pains shooting through it. I finally took an Ibuprofen. I hate taking this, it always leaves me nauseous. I just didn't know what else to do and I don't know if it's even working yet....
"Starting out with a lower dose of doxy is not really such a bad idea for someone who has apparently had tickborne diseases for a long time. In fact, some doctors ramp up meds for new patients with longstanding disease in order to avoid a bad herx. So don't worry that you aren't on the optimum dose. But do find a lyme doc quickly. A few take medicare."
This is exactly what one doctor wanted to do with me awhile back. She was talking about pulsing the dose of Doxy because she suspected mycoplasma (this was before the bulls-eye rash).
"Also, ask to be put on their cancellation list."
That's a really good suggestion. I think I'm going to be making calls tomorrow....
Posts: 2839 | From California | Registered: Jul 2012
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posted
Can you describe your hip pain - does it feel like it's in the joints or the soft tissue?
Posts: 13116 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
It's in the inguinal area. There's a big lymph node there and the pain is next to it (in the outer area more towards the hip). The pain shoots down my leg whenever I move or lift my leg.
It's not appendicitis or hernia. The internal medicine doc suspects arthritis and mentioned getting an X-ray in my follow-up appointment this week.
I haven't done anything new. One "theory" from the physical therapist was that I'm lifting from my hip. I've done everything suggested to me to calm it for a month and a half and it's getting worse.
I also noticed my knee and wrist pain getting worst over the past couple months.
Posts: 2839 | From California | Registered: Jul 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
It all sounds lyme related to me. I had hip pain, and shooting pains in other areas of my body. Once I got the correct dosage as well as correct combination of abx, the shooting and stabbing pains eventually went away. Only one of them returns every once in a while (pain behind knee).
You just need to get to an ilads doc. Seriously, no one else is going to get it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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From your description it sound like you've had this for a while. All those other diseases could be caused by lyme. DONT PANIC
Things can get better. I've been to hell and back with this disease and have every coinfection, parasite, virus, etc- I did the whole antibiotic thing (ivs, Intra muscular shots, heavy heavy meds)
If I could do it all again, I would go right to RIFING There is a great thread on this site about it and there is a must read book by Brian Rosner-
I know antibiotics work for some but in my experience ( and alot of rifers I know) said that if they knew about this in the beginning, they would have chosen this route. For me, I wasted 4 years of my life and got sicker, Now I'm starting over again- 7 months into it, off my 25 plus drugs I was on, and killing stuff
This is very overwhelming I know, please feel free to pm me and I will try to help. I WISH WISH WISH I had known this in the beginning
Posts: 298 | From usa | Registered: Aug 2009
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posted
Looks like you have a lot of treatment paths you can take.In my case,I got bit twice in two weeks and got rashes on both bites.I was taking doxy for the first one at 200mg per day with some effect on the rash.I increased it to 400 mg per day after the second bite and both rashes went away in about a 12 days.I was sleepy and light headed during that period, but I feel fine now.Just another treatment to think about.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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posted
To reiterate, be sure to take a lot of probiotics or you will end up with candida and that can be a whole other nightmare.
Posts: 705 | From WA state | Registered: Jul 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm 2 weeks into treatment with doxycycline. The bull-eye rash is completely calmed down and flat (just looks like discolored skin). I'm feeling slightly better (not as out of it, but still worn out if that makes sense).
Is this a good sign?
I was able to get in to see an infectious disease doctor who takes Medicare (it's the best I could find with my budget).
He extended the doxycylcine to 4 weeks (200mg per/day), so at least I'm getting that, then he wants me to run a bunch of blood tests.
He didn't prescribe flagyl. I'm scared I forgot to ask about it, and it sounds like a really need this. I could call the office to see if he thinks that would be good. He had the "I'm the expert, you're the patient" attitude, so I don't want to offend by sounding like I'm telling him what to do.
Any other suggestion or insights?
I'm taking LOTS of probiotics. I was taking that even before the antibiotics and have increased them.
I have a nasty fungal infection though (a big rash that started BEFORE the doxycycline, and I have taken 2 diflucans since being on doxycycline, 1 tab one week apart, I guess it's suppose to knock stuff out with one dose but my other doc thought I'd need more).
The infectious disease doc said that wasn't enough and could create resistance. Does anyone know what he means???? Is it resistance to the fungal infection or diflucan.
Anyway, he wants me to take 10 days consecutively of the diflucan now.
Can anyone make sense of this for me? Am I doing the right thing? Is it too late to take Flagyl?
"Believe me & all of us here when I tell you 100 mg twice a day for 21 days, is not *nearly* enough to assure that this "new (current rash) infection" is permanently quashed. It might just temporarily clear your new symptoms & rash. A relapse after insufficient treatment seems to be the rule rather thann the exception.
Most Lyme docs (see ilads.org) recommend antibiotics for 4 to 6 WEEKS for EARLY stage Lyme, though it sounds as if you might very well have been infected prior to this, so you should be evaluated for the 'disseminated' or late stage form by a knowledgable physician.
Be glad you are "reacting" to the doxycycline. Don't cut down unless absolutely neccessary. It means the bugs are being "hit" by the medicine, BUT many of them can- & DO- simply convert in form to a passive 'spheroblast' or "L-form" (that has no cell wall, per se) to avoid annihilation ("lysing" of the bacteria). This is why you NEED to be on a "cyst-buster" likle Flagl to tackle the other main form of Lyme."
Posts: 2839 | From California | Registered: Jul 2012
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