LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Hi, 14 years ago I had a tick bite and an EM . I was not treated properly and didn't know and I am now very ill. I have had several Elisa tests- negative- just begged my GP for Western Blot and she said yes, but it is from a local lab and may not be very informational. My dr is telling me since the Elisa is negative then I don't have Lyme. So.... I have a couple of choices.
Do I A) Ask her to refer me to a local health network Infectious Disease Dr or Internal Med Dr.? This would be the closest and least expensive way for me since since I am low income and they provide a reduced cost service for me. They will be very main stream and I am not sure I trust them totally since my experience with these network Drs has been frustrating.
B) Go to a low priced LLMD and hope I get the right care, but travel 2 hours each way to see him? and still end up paying hundreds (instead of thousands for top LLMD doc)?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I vote for "B" .. No ID Dr is going to help you past 2-4 wks. If you want to go to one for testing, you could try it, but he/she still won't use the right lab and the result would be the same.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Go straight to a ILADS-educated LLMD or an ILADS-educated LL ND.
Bypass all others. DO NOT see an ID Doctor. They cannot, will not be of any help - and will go out of their way to dismiss and insult you, while ruining your reputation in your medical file with psychological labels.
See "WHY an ILADS LL doctor?" in the next post.
There are other ways if cost is truly prohibitive. But do all you can to arrange that if possible. If not, you might consider as many consults as you can get and then approach with a rife or other measures.
LL Naturopathic links here, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You really do not ever need another lyme test. That is very clear. Your body has provided the most positive tests: the EM rash, symtoms, history, clinical presentation.
Some LL doctors are being pressured by outside forces to get lyme tests though, to justify treatment. If they can treat without the test, go for it. It could very likely be a waste of money so don't try unless it's the only way to get treatment.
You should be assessed for other tick-borne infections, though. I'd put money there - with ONLY an ILADS educated doctor. "Assessed for" does not necessarily mean a lab test, though, as they are not perfect either.
I would be clinically assessed by the best LLMD you can afford. She / he may suggest certain tests with specific labs (that regular doctors will not do).
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I get that as I have read just about all you are suggesting, but I have absolutely no money so I am not sure which way to go...... I called one dr LLMD that I really liked, but the office staff told me they don't take payments and some people decide to wait months and months until they get enough money to cover the costs
I really don't want to do that since I am getting sicker by the day it seems, plus it would take me years and years to save up enough money to see one of the drs that charge greater amounts.
I will be struggling greatly even with a less expensive dr.
I want treatment now.
I spoke to several LLMDs over the last 24 hours.
Some want thousands right away in the form of $600 office visit, add on blood work, add on monthly visits and treatments, etc.... you know all this.
Then there are some that are referred to me from this site and ilad who are not the top drs- they charge only a couple hundred for visit and only $100 or so for other visits and IVs, etc.
If I go with the local non LLMD infectious disease office they said they treat for 8-10 weeks, but who knows.... plus I need to have a referral for there and THEN they review and THEY decide if I need to come in or not!
THis is all driving me crazy. I can barely function and then have to make these decisions if overwhelming
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
If you go with A, you will eventually have to go to B.
The ID docs treat positive Elisa AND WB.
If you were one of the few, and had a positive test on both... And because you've been sick for so long, the ID docs would probably only accept a positive IgG. If you had a positive IgM, then they would say it was a false positive.
Anyways, if you jumped through all the hoops, they would give you 200 mg doxy per day for 3 weeks and call you cured.
Try an LLND... May cost less than an LLMD.
Sorry to be so negative... But I just went through the same thing myself. My IgM was positive. But because I've had my neuro symptoms since Dec., the doc said that was a false positive, cause I should only be making IgG antibodies now. Which is complete BS.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, GretaM I just got off the phone with the ID office and they told me I MUST have a positive Elisa AND WB to even be seen there.
O brother.
So I amn ot functioning on full IQ here.... I would like to find a ND as you and Keebler suggest, but where do I look? I think I saw it here somewhere, but can't find it now...
Like I said, my brain is acting badly and playing tricks on me making this all to exhausting-
THANK YOU!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some NDs and LL NDs can still cost yet there may be ways to still find the care you need.
Mentioned above that if a LLMD is out of reach, you might be able to find a LL ND (as less cost). Sometimes, NDs can take on one patient at a time at a sliding-fee scale.
Some naturopathic or acupuncture clinics have programs for low income, too. Perhaps as little as $5. - or even less. And some such clinics sometimes get supplements donated.
It is best if they are lyme literate and ILADS educated, however, if you can't find one who is and can find someone to help at least that might be a step in the right direction for the time being. Be sure they would at least study ILADS' website, etc. and talk to other LL NDs, though.
Start here, tell them what's going on and ask if they have any suggestions for you. It may help when asking to ask if they know any ND "in the position to offer sliding fee scale - or maybe help someone without any funds - somehow?"
Pennsylvania Association of Naturopathic Physicians -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There may be someone in your area lyme support groups who could let you use their rife. Just maybe. If you have anything to sell or trade, that could also be an option so might get your own.
eBay is a good place to sell things that you may not be needing, or if friends & family want to pull their usused items together for you.
"How to Find an ILADS-educated LL ND" here, too, with informational articles as well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
In some states, LLND's can't do much. They can only help you with natural treatments, no antibiotics. Just so you know.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, as LymeToo mentions, do find out up front the range of treatments that any LL ND can do in your state.
Laws and ND practice regulations vary state to state. I do not know the specifics with PA or adjoining states. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Can your stomach tolerate any raw garlic?
If so, you might start with one clove of raw ORGANIC garlic, in the middle of a substantial lunch.
The clove is the smaller almond shaped piece in the larger head. Start with one small enough to swallow whole (or gently cut up into "swallowabale" bits if needed). Do not handle it too much.
Peel and cut off the hard end. Keep intact but as you put into your mouth, bite ever so gentle as to just barely bruise the skin. Then swallow.
Finish with a bit more food.
Raw garlic can help in many ways. I'm not at all saying it's a substitute for treatment but, for someone with "no money" as you state it may be some benefit.
If possible, work up to two cloves a day. No more as more can cause anemia.
If you know someone with an organic garden who grows herbs, ask what kinds they grow and study as to if they might also be of any help as you figure out the next step.
If you might have an ulcer or if garlic oil burns you, do not do this. Some folks can do this just fine and others cannot. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I checked on LLNDs...closest one is states away. That is not possible for me.
I don't remember eating raw garlic so I don't know.
Hmmmmm....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wow, they must have replied back very quickly to you. I don't see a phone number, only an email option for contact. You might ask them again, then, if they can suggest NDs who are familar with HIV.
[Or maybe you contacted your lyme support group and were told none, but still, look further.]
Not that HIV is at all like lyme, it's just that any ND who treats HIV would have the skill set, energy & desire to work with patients who have very complex illnesses.
That is how I found my regular ND, by asking who treats HIV. She is not LL, exactly or fully, but still very helpful in many ways and her fee is very low for me. It's all I can afford.
You could call the regular NDs near you and ask to talk to their office managers for 5 minutes. Then request a 5 minute phone consult with the ND to see if there may be some way they could help. Some will talk with you by phone for 5 minutes at no charge; some may have a small fee for just an informational phone call.
Start asking about possibility of sliding-scale fee. If they do not, ask if they know any nearby who are in the position to do that.
Then ask if they can prescribe any antibiotics.
If not, ask if they know of MDs who may be open to working with you. NDs will know the best of the MDs out there.
With nearly 50 in your state, hopefully, someone can offer some degree of help. Perhaps there is one in the process of becoming LL?
This may not work out but it's worth a chance - could a friend do some of this searching for you?
posted
You could get a copy of "Healing Lyme," by Stephen Buhner and try some of the Buhner herbs, which treat the illness. There's a yahoo group you can join, Lyme_Aid Buhner who can help walk you through it. Also his site, www.planetthrive.com.
Many try the herbs because they can't handle antibiotics, and many do them because they prefer herbs over taking antibiotics. I am not against antibiotics - am just trying to think of a more affordable way for you to start treating.
Then you should be doing some cheapo ways of detoxing along the way - people can discuss that with you here.
As well as some simple fortification suggestions. If you have any ability to get bloodtested, that can show your vitamin D level, your T3 and T4 levels, etc., and if low, we supplement.
It's important to know what you're treating, whether it's only Lyme or whether you have any co-infections. You can google for the symptoms of babesia, bartonella and ehrlichia and see if you think you match any.
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Thank you Robin123. I looked at the symptoms of those other co-infections and it doesn't look like I have any of that to the extent of fevers, and the other heavy duty stuff... I have pretty much typical Lyme symptoms.
I finally got the record from my midwife today- from 14 yrs ago when I was pregnant. It actually said I was tested which my husband and I do not remember. It was the Elisa test given one day after the bite
It does say in my file that the negative that soon to bite is not to be taken as such , and to retest in 5-8 weeks.
well, I do not remember anyone telling me to retest and I do not think I did. So, I guess I was never treated and now what? Am I imagining all of this? Did it go away? I am sick all the time, but all these negatives...
and no dr I have ever had thought that me having EM for 8 weeks was indicative of Lyme. !!!
how can Drs be so uneducated???
this is just crazy. I wanna get off of the ride now please!
sigh
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
If you believe you have Lyme then even 2-4 weeks of treatment can buy you some time till you can save up some money to see a LLMD. Research some of the abx. protocols for Lyme and find a way to get the abx.s. If you went to your GP and told them you just got bitten and are feeling sick would he or she treat you?
Sometimes we need to be creative in how we get our meds until we can afford to see a LLMD.
Herbs could also be a way to go in the interim.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Just found out my GP will not treat me. My Elisa came back negative. I begged for another, she gave me Western Blot which I just found out came back nagative.
She said she will not treat me or refer me to anyone.
So.... was it the lab? do I have lyme? I am already tired of all this... UGH...
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Which lab did she use. Need to get tested via Igenex.
How is it one individual can have so much control over our health and to make that type of decision. Seems so wrong...
If you really think you have lyme then keep searching for a doc that will give you abx.s'.
One time while I was waiting to see my llmd I was really sick - had gotten bit AGAIN - and went to a local Urgent Care. I told them I was bitten a week prior and felt flu-like. They wasted no time and gave me a month of Doxy.
If you have chronic lyme you most likely will not test positive....GP's are clueless...Perhaps a walk-in clinic or urgent care center would be better then your GP for now.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Of course you have Lyme. You had a bite, an EM rash and you have symptoms of Lyme. If it walks like a duck and quacks like a duck, then guess what?
Now to convince the ignorant doctors!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, maybe you are right desertwind! If I say that I just found tick now and I had those symptoms maybe they will treat me? But will it be enough???
I mean I have had it for 14 years now. and I think it has crossed into my central nervous system as my brain is not functioning properly.
((((((
I really think I have lyme. My husband believes it and he is hard to convince. I didn't even have to convince him!
My Western blot came back today, dr said I didn't need treatment. I have one "present" band 23 BB IgG. it was a shallow test as there were only 13 bands tested.
I have so many emotoins right now!!!
anger, fear, sadness, apathy, desperation, almost hysteria....
I feel like I am in a dream and I need to wake up!!!
This cannot be real! Drs. that don't want to help me???? I really don't like drs. and this is because over the last decade of my life NONE of them have ever know how to help me or given me any productive reasoning to help me get well!
- I think I need ANOTHER cry...
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You are going to the wrong doctors. As LymeToo, says (and based on your other current postings),
of course you have lyme. Band 23 is positive, past EM, history, sypmtoms and clinical presentation that is spot-on.
Again: you have been going to the wrong kind of doctors. Change your plan and your life will change. Promise.
I would not try to convince any ignorant doctors. Avoid them. Do not hire them. They do not want to learn, cannot learn enough to help you now (so much to learn they can't possibly learn it all right away) and
their bosses, clinic heads, medical boards, IDSA will not allow them to delve into what it takes to treat lyme.
Find a real LLMD, LL ND or read as much as you can and settle on the best plan you can afford.
I know it's rough to afford a LLMD, as you have often said. Still, if at all possible, find an ILADS educated LLMD or LL ND.
Coinfections need to be assessed.
You have many links for things that could fill in the gaps, at least for now if that's all that can be done.
You can click onto your posting name and see your posting history to find the "How to Find a LL ND" thread where there are many articles and books for the various other ways to approach this.
I know this is very overwhelming, distressing, sad and so very wrong. Our medical system is broken and those with lyme / TBD are so very much abused.
But try not to be in shock too long about all that. It's horrible, yes. But we have to bolt from that to a path that will work for us, not hold us back.
Do rest. Do grieve. That's okay. Also, know that there are ways to move past this, even if at a turtle's pace.
It's very clear that at least lyme is on the plate. Band 23 is confirmation of that. Now, you can move ahead, however that can be for now.
Do nurture and nourish, always. That really matters during this particularily odd time. Hold on. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To better understand the rabbit hole that you have found yourself in, this documentary is very validating. You are not alone. And this can get better.
Under Our Skin -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Ha! Keebler, I just watched "underourskin" about 2 hours ago! very good, but made me sick to my stomach as my poor son probably has lyme from being inutero.
I have checked thru the info you gave me (most of it as my head and eyes are making me feel extremely IQ deficient)
I have called about 30 dr offices and narrowed my search to about three drs that I would seem to trust the most. I have picked the one closest to me and he is also on the least expensive side which is good for me as you know.
I was speaking in my earlier post about the dr that I saw last week for my shingles. I only mentioned her because she was the one that thought I should be retested for lyme, and I must thank her at least for that!
I hope this all works out.
i have known the med system is broken for a very long time.
I have seen every kind of dr you can think of over the last decade and I hate going and I don't trust ANY dr. I have even considered going to med school NOW at my old age of almost 50 just to do something right in this world!
I will certainly rest and nurture...thank you - I do need that reminder always as I am the type that "has a spring up my butt" as someone once described me.
I must say though, that it has been very easy to take time for myself these past 10 days since my body is REALLY telling me to......
I have noticed drastic changes to my self- and mostly cognitive . not good. very scary to someone who is always on top of things!
Thank you so very much for caring enough about complete strangers as to give your time and energy to help me. thank you thank you
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You are welcome. I've been there on all levels, believe me. So many have. So we have to hold the flashlight where we can.
A basic check-list:
Are they connected with a university medical college clinic? If yes, run. Not going to find a good ILADS LLMD there.
[Of those below, some can be answered by the office manager on the phone before actually booking the appt. Say you have several questions and wonder if they might be able to talk for a couple minutes.
Some questions may need to wait until you first see the doctor - and so you can get a sense of them - but do not go if they don't meet the basic criteria.)
Is the doctor you plan to see an ILADS member?
Has she/he attended ILADS conferences?
How long have they treated tick-borne infections? Can they address the full range?
Are they current with other ILADS LLMDs' work? Which ILADS-member articles or books do they most admire? Or which presentations seemed most eye-opening?
Do they have any articles or books to recommend while you wait to see them?
Have they written anything themselves about lyme? [Soften with something like: "just wondering, I know just being a doctor probably takes all their time."]
What time frame do they give you for treatment? [Likley they will say something like it's hard to tell until they see you. But you need to know if they ever treat for months or years. You need a doctor who can.]
Do they follow Burrascano's guidelines(bascially, with individualized attention, of course - and updated revisions) ?
Do they suggest support for liver & adrenals?
What brand of Probiotics would they recommend - and should you go ahead and start that right now? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry about your son. Be sure to tell the LLMD about him, too.
I know this is all a huge amount to digest so do "turn off" for a while. Unplug and tune into nature, joy, music, laughs - however you can.
You are at least headed in the right direction. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Your story sounds so much like me. Went undx for over 10 years I did finally get a dx through Igenex and saw a LLMD . Treatment began but due to financial reasons and not being able to travel I couldn't continue.
I did see some improvement but over the past year all my symptoms are back to the point I am in bed a lot.
No longer can I afford a LLMD and haven't found a doctor that will acknowledge Lyme if they do they do not know how to treat. So if there is anyway you can see a LLMD do!
I thought for a year or so I was getting better only to be right back where I was. Talk about Lyme anxiety it is horrible plus the pain, off balance, weird head feelings, etc etc..
Please keep me updated as I am of no help but sure can sympathize ..
Posts: 1058 | From VA | Registered: Oct 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Just posting this link in case you may qualify for testing through the LymeTap assistance program. Testing can be done through Igenex:
With a history of a known tick bite, no treatment and a bullseye rash, I would not doubt your diagnosis.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
THnak you much phyl6648. I appreciate knowing you are out there.... I am sorry you had to stop treatment. I pray that I willbe able to do it as long need be... this is like a bad dream!
I have a lot of anxiety- is this a lyme symptom?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Thanks Dekrator48! I will check this out!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Search this site, you can order doxycycline from overseas, yes it's good I've done it before and had the pharmacy verify it. Look up fish moxy , also minocycline for fish, etc,
Posts: 532 | From Texas | Registered: Oct 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I got my doxy script and called around...most plasces were over $300 for one month. then i went to CVS which was $160- same as Walmart. Then I remembered that I had a discount card for RX I got when on assistance qhen my hunny was out of work.... the total with card.... $29.00!!!! yay. thank you GOd
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Lisa,
When I first figured out I had lyme, I didn't have any money either. It is a long story, so I won't go into it.
Then slowly add the herbs he suggests for the other possible co-infections that you might have.
Since You don't know how many tick infections you may have, why not treat as many as you can herbally.
You live in Pennsylvania, and if you check the support group info on the left of this website, there are many groups in PENN.
Contact them and explain you situation. They may know of a local doctor who can treat you cheaply, or maybe someone can lend you a Rife machine.
I used herbs for quite a while before I won my disability case. Then an LLMD appeared in my state and is treating me.
I will send you a PM, also.
The website I mentioned above is the cheapest and easiest to use for treating yourself.
Regarding the Buhner protocal, you might just start with one herb (cat's claw or the knotweed and slowly add more as you can afford them.)
Posts: 1358 | From Midwest | Registered: Apr 2009
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks rivendell, I found a dr that seems to be pretty good . He has an open mind, listened to me and accepted what I said and thought, which is so great.
He charged me $90 for 15 minutes which I paid up front, then when I got there I was afraid to go over which we did- I think I was in there at least 30-40 min and he did not charge any more!
I got antbx which was $360 at weiss, $350 and Wegmans, $160 at Walmart and CVS- I rememebreed that I had a discount card in my wallet! and ended up paying $29! yay.
so I guess for not it will be OIK but herbs and etc. will add up surely.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Good to hear you got started! I second the recommendation to get in touch with area support groups and chat about options.
That's good that you seem to have just Lyme and not all the other co-infections to deal with. Band 23 is a Lyme band. You don't need to test - you had an EM rash.
Our main doctors' organization has just launched an awareness campaign. I suggest you go look at it to know that everyone will be banding together to fight this situation. www.ILADS.org - click on LymePowerOfUs.
In the meantime, you need to stay strong. I know you don't feel well, but you have to make a knot and hang on, so to speak. Do your figuring out as you can, and we can assist here.
Another good thing - at least you know what's going on. So many of us had to hang on through the mystery of it all for years before we found out.
So in summary, to reflect back some of the positives in your situation, you have a known rash which means Lyme for sure and you don't have to test,
your test showed band 23 which is a Lyme band, you know what's going on, and you don't have co-infections which can make treatment more challenging.
So, hang in there and keep making forward progress, especially by reaching out to others in area support groups who can give you tips for accessing care, advice, etc.
Posts: 13116 | From San Francisco | Registered: May 2006
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Lisa, I'm glad you found a doctor you like and can afford.
We are here whenever you need help.
Posts: 1358 | From Midwest | Registered: Apr 2009
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my dr suspects bartonella as I have almost all those symptoms. I had the EM 15 yrs ago (thought it was 14, but checked records). I actually had 3-4 people recently suggest bartonella to me and possibly some other-
so I am not sure I don't have coinfections. Of course, I am not sure I do either,
My LLMD wants to wait a couple weeks since I have antibx sensitivities , to deal with the coinfections. and he said we will "add more on later".... is this typical?
The weirdest thing is to me: I had that rash that long ago, went to tons of other special drs over the yrs because of symptoms (diagnosed with fibro, stress, chcked for lupus, arthritis, Ménière's, etc), but never got terribly ill until....
I had one HUGE bout of something about 7 years after the bite that had me sleeping constantly, totally fatigued, terrible joint pain and "bowling balls" hanging from my hands.
This lasted a good 4 weeks then left as suddenly as it came
then nothing debilitating until a couple of weeks ago, a few days ofter some major gardening, I had two separate rashes and MAJOR neurological stuff that has since not gone away, but now comes and goes in intensity with constant underlying symptoms.
I feel really crappy today.
I am thinking that I possibly have two different bites ????
whatever. My dr said it doesn't matter how many I have had now and that I only need to focus on getting better.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Maybe you were bitten again while gardening.
I have had many bites.
Stick with your good doc.
Posts: 1358 | From Midwest | Registered: Apr 2009
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