I found an imbedded tick in my arm in 9/08. Long story short, I didn't begin abx 'til 12/24 (400 mg/day Doxy.) ELISA + and 41 WB +
Symptoms: joint pain, nerves tingle/twitch on left side of body, chills, fatigue. I live in an endemic area and was a healthy woman prior.
ID (who is supposedly 'Lyme Friendly,') sent blood to Med. Diag. Lab in NJ to ck. for co-infections and re-do WB. Today, said that "Everything came back negative." and that I "don't have LD or any tick-borne infection." He'll give me another month of Doxy and if there's still no improvement then no more Doxy.
I'm so exhausted. I called for appt. with Dr. R. in nyc - 3 month wait. Tried Dr. S.M. -closed for wknd. It's like shooting an arrow into the abyss.
ANY recommendations or advice, please???
Posted by Keebler (Member # 12673) on :
- I am so sorry you've been clobbered not just by the tick by by the ID doctor. Sadly, It happens so often.
I have many links that explain what you seem to know: it's important to see a LLMD. I'm not together enough today to copy and paste those and since you seem to get that part of it I will post a set that I just posted at a couple other threads today, so it's handy.
Pardon my typing as if instructions. Just easier for my brain and hands. You have some choices but this is what I would do:
Schedule with the ILADS-educated (or ILADS-member) LLMD whom you think is best for you, all things considered.
After scheduling, ask to be put on list to call if any cancellations.
Ask they they know of area GPs who can help you in the meantime.
Or LL ND (naturopathic doctor). Many LL NDs are ILADS members and this is really important. Most NDs don't have the knowledge.
I would get some very good OLE (Olive Leaf Extract) and a few other key supplements. Allicin if you can do that.
Fish oil, magnesium and others on Burrascano's supplement list for support. Milk Thistle is good to help your liver. More liver links in the last thread listed below.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
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Posted by LizaLu (Member # 21483) on :
I was told i was negative, when in fact, i was equivocal on WB. Please please obtain your lab reports so you have them for your records.
My visit to ID who was lyme friendly was yeah interesting. He called IgeneX a quack lab and most online information about Lyme, BS.
Drop him, and don't look back.
If you can afford Dr. R, i would make that appointment. I've heard really great things about him. I know a girl who flew out from MN here to see him, and i also considered it myself.
Consider taking the Doxy for the one month now while you wait? I dont think it could hurt you, although it may have little effect with disseminated Lyme. Def not aggressive enough.
Good luck, Liza
Posted by Keebler (Member # 12673) on :
- Myrolea-B is the Olive Leaf formula suggested by a Lyme Friendly ND who has had other lyme patients do fairly well. It's not enough alone for long periods of time but, now with the doxy, and when that runs out, this may just help you while you wait for your LLMD.
If you get further testing, be certain to tell the LLMD about this as, like abx, it can skew the test results.
I have also used this during the short times I've been on abx (antibiotics) and it helped me avoid a systemic candida (yeast) infection that always hit me with any abx use. Ditto for Allicin, Coptis, Andrographis, Burbur or other herbs containing berberine or with antimicrobial action.
You should also take good PROBIOTICS when on this - just at a different time.
In the meantime, your neighborhood vitamin store may carry a good brand of OLE - even if you are on doxy, that is helpful.
Milk thistle, too. Essential to protect your liver from the abx.
Myrolea-B (White Tiger) is a simple formulation of highly concentrated extracts from four Chinese herbs and one Western herb.
The Chinese herbs include forsythia and lonicera, two of the key ingredients of Ilex 15 (and the main antiviral ingredients of Yin Qiao Jie Du Pian), thus boosting the dosage of these essential ingredients.
Myrolea-B also contains the antiviral agents scute (huangqin) and terminalia (hezi). The Western herb in this formulation is olive leaf, which is one of the primary anti-viral herbs derived from the European tradition.
SHUANGHUANGLIAN: Potent Anti-Infection Combination of Lonicera, Forsythia, and Scute - by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine - 2003
Shuanghuanglian (SHL for short) is a modern formula that was devised in the 1960s to treat a variety of infections. It is comprised of the alcohol-water extracts of three herbs: lonicera (shuanghua, often called jinyinhua), scute (huangqin), and forsythia (lianqiao). . . .
. . . One of the early preparations of the SHL was a tablet made of equal proportions of the extracts of each herb. This was used to treat leptospirosis, a disorder caused by a spirochete bacteria, related to the organism that causes Lyme disease.
Leptospirosis causes initial symptoms of fever and chills, headache, and muscle ache (especially in the shoulders); these are consistent with "flu-like" symptoms described for the onset of many acute infections.
In a 1971 report, the formula was described as being made in 500 mg tablets derived from 3.7 grams of the crude herbs, and being administered in doses of 10-15 tablets (thus, equivalent to the extract of 37-55 grams of herbs) every 6 hours (1), a very high dosage.
. . . Recently, Shuanghuanglian has been applied successfully to treatment of Coxsackie B3,
. . . The general indications for SHL . . . are "relieving the exterior syndrome, clearing away heat and toxic material," and its indications are "treatment of fever, cough, and sore throat that arise from wind-heat syndrome."
It is said to have "a good action in treating upper respiratory tract infection, tonsillitis, laryngopharyngitis, pneumonia, acute enteritis, viral dysentery, etc., when caused by virus or bacterial infection."
- full article at link above.
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Posted by Keebler (Member # 12673) on :
- Toxins affect the body in many ways. So if you wonder why the emphasis on milk thistle, etc. this explains a few things and also offers some additional suggestions beyond that of the authors listed above.
From the Townsend Letter for Doctors & Patients, February/March 2006
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
by Prof. Robert W. Bradford and Henry W. Allen
EXCERPTS: . . .
A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism). . . .
[extensive explanation of:]
* Lyme Disease Toxin . . .
* Action of Toxin . . .
* Dietary Supplements in Lyme Disease . . .
. . . .
- Full article and great photos at link above.
-----------------------------------
NOTE OF CAUTION: While this is an excellent article regarding the information about the spirochete/cyst, there is one serious caution with one of the treatments suggested: Bismuth.
Bismuth, in various forms or methods of use, can (and has been) fatal. So, cross that off your list. If you download the article, please copy and paste this note to top your page.
Reading - and learning - about the nature of this infection is invaluable. The authors offer much in that regard, I just wish they'd adequately cautioned bismuth.
Thank you, Keebler and LizaLu. It was a disheartening day. I did leave with copies of lab work but page 2 is missing.
ImmunoglobulinM is 273 (normal range is 40-230). Do you know what that means?
Also found out that I am anemic - wasn't in July - during a routine physical - first in 6 yrs... those days seem to be gone...(He did draw more blood for re-ck)
p.s. You posters are AMAZING! Thanks, again.
Posted by Keebler (Member # 12673) on :
- I don't know anything about Immunoglobulin M -- but you can do a cross search with it at Google. Using the term "borrelia" rather than "lyme" may bring you more scholarly results.
(At the link, just copy and paste: Borrelia, Immunoglobulin M )
A consideration about abstracts at PubMed, it all depends on the author as to how accurate the material may be. While there are many articles written by non-LL doctors, PubMed rarely publishes the work of ILADS authors (you can see that at the ILADS site, though).
Still, PubMed in an important part of the search process as they often post abstracts from around the world. Yes, the non-LL authors have made their mark on other countries, too. But, often, some real research makes it through.
Babesia (just one of many tick-borne infections) frequently causes anemia. You have no idea how many doctors don't have a clue about that.
I was sent for a toxic full GI barium scan to find the source of severe anemia. They could not find anything the doctor just said she'd never seen such an extreme case but I just must be a fluke.
It was several more years before Ignex tests showed chronic, active positive for several TBD. Babesia was one of those.
I hope you can see a good LLMD or LL ND very soon. In the meantime, I do apologize for the equivalent of two semester's of graduate level reading.
Good luck. Look forward. -
Posted by Keebler (Member # 12673) on :
. . . "With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years. Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
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Posted by Marie1959 (Member # 24009) on :
Thank you, Keebler from the Magic Forest. You are so good!
The more I learn, the less I know.
My brother had GBS 30 yrs. ago, my mother had Type 1 Diabetes and I have had Bell's Palsy twice in my life (quickly recovered each time, TG), so I'm thinking that this tick has started some kind of auto-immune cascade. Weird how it's the left side of my body.
If I can't get into Dr R in nyc til March, I may see a local neuro to investigate...what do you think?
p.s. I was also a woodland creature until this tsunami. Posted by Keebler (Member # 12673) on :
- Most neurologists will kick you out the door if you even mention lyme. Most are inept and uneducated in this important field (even if brilliant and skilled in other areas of their specialty).
I would say that in addition to rheumatolgists, neurologists who know nothing about tick-borne or other chronic stealth infections do far more damage than good - and you pay them dearly for the abuse and neglect.
However, call the LLMD whom you plan to see and ask if he/she can give you the name of a LL neurologist. I would go to none other. Not everything is connected to lyme but only a LL doctor will able to make the proper distinction.
You also need to know that neurologists don't treat lyme.
Bells' Palsy is frequently a sign of lyme (but a neurologist may treat with steroids, NOT good for lyme). As you will learn, neuroborreliosis (neuro lyme) has many symptoms that most neurologists will quickly dismiss.
March is not that far away, really. Ask the LLMD's office for advice on what to do in this meantime. If you are having a neurological emergency, you might want to see if you can get into a LL specialist. Otherwise, if it's all just part of the mix of lyme, your LLMD should be able to get you on the right tract.
Advice for if you go ahead and see a non-LL neuro: they often insist on lumbar puncture (spinal tap) . . . NOT a good test for lyme.
I wish I could write on simple sentence but I'm never sure if I'd say it correctly and clearly. I can't say if an appointment with just any neurologist will help. But I do know, 99% of the time, lyme patients have been tossed out with the garbage in these appointments.
I try not to let my personal experiences color my answer here but remembering many non-LL neurologists who, over the years, were beyond damaging to my life, my future . . . it's criminal, actually. Even after I had the dx of lyme and 2 other TBD, I was treated as if a lazy criminal.
Even during seizures and falls . . . when I could not talk or walk . . . I was told nothing was wrong. Over and over. Probably about a dozen different neurologists in over 14 years' time - in five different states.
One did, however, dx an inner ear disorder that all the others had missed. He was spot on with that. But, you know what, inner ear disorders are very common with lyme disease. He sure missed that part, the most important part.
He had told me I would just have to live with vertigo, tinnitus and hyperacusis forever. He had no clue that infection was involved.
But he also told me he thought I brought it upon myself by wanting to be sick to gain attention. So, even with a documented inner ear problem - he said I was faking it. He has never seen other patients ever as sick as I was. It was his only "logical" conclusion.
If someone does not match up to the predicted results, they are tossed out on their ear. Somewhere, most neurologist, most doctors, seem to have lost their own minds and their ability to learn. I know most decided long ago never to respect what a patient tells them.
Sorry . . . I had no idea I would come unleashed like that. It just really hit a nerve and I want to protect others from such abuse.
I also would not add this here if I had not later read that the same experiences were endured by many, many other lyme patients. These recounts are alarming in the negligence perpetuated.
It will only stop when we stop paying those doctors who are uneducated about the infections we face. Well, really, it will never stop as long as lyme is so political.
Still, right now, each of us has the right to a doctor who is the best educated and informed for our needs. Finding (and affording) good lyme literate doctors - in all areas of health care - falls upon us. We simply can no longer accept their failure. We can find the best and the brightest.
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[ 01-22-2010, 08:40 PM: Message edited by: Keebler ]
Posted by Marie1959 (Member # 24009) on :
Now I can see why you are an "Honored Contributor" ~ truly, it is an honor to be on the receiving end of your experience and wisdom.
It was as if I was on trial today - just horrid. While waiting for the March appt. with Dr. R., I also have a call into Dr. S.M. in nyc.
Keebler, I am so very sorry that you and so many have suffered from this plague. I sincerely hope that you are better today?
Posted by Lymetoo (Member # 743) on :
ID drs can't be counted on to do ANYTHING right when it comes to Lyme diagnosis or treatment. Sad to say!!
I see you posted in Seeking for info on specific drs. I would edit that and ask for the complete list of LLMD's in NY. There is a very big list for you if you ask.
Good luck and welcome to Lymenet! Posted by Marie1959 (Member # 24009) on :
Thank you, Lymetoo in TX Tu Tu. Siciliano thoughtfully pm'd me with a long list but ... where to begin?
I was hoping for a recommendation for an LLMD on LI or in NYC or in Westchester County, NY. So, I narrowed it down to Dr. R. and Dr. SM with hope for some feedback.
PMs are most welcome!!
Posted by Lymetoo (Member # 743) on :
PS.. forget the neuro .. they're just like ID ducks .. dumb
Posted by map1131 (Member # 2022) on :
Did you get a copy of all the blood tests from the dum dum doctor? If not, I'd be on the phone Monday early and request a copy be sent to you.
You might find some hidden surprises in the lab work. Again you are dealing with dum dum.
Posting results on this site might give you some insight to results. Neuro most likely a dum dum too.
Pam
Posted by Limeaid (Member # 22357) on :
Keebler, thank you for this information! I wasn't aware of any of this, so this helps me tremendously. Take care, Limeaid
Posted by LightAtTheEnd (Member # 24065) on :
I got a laugh today when I filled out an insurance form for a company whose mascot is a duck.
The rep gave me a stuffed duck that is wearing a little doctor's lab coat and a stethoscope hanging from its ears.
It even quacks out loud when you squeeze it.
It doesn't actually say "IDSA" on the lab coat, but that is what I was thinking of when I saw it.
Posted by Lymetoo (Member # 743) on :
Good one, Light!! Posted by seekhelp (Member # 15067) on :
Sometimes a picture really is worth a 1,000 words. I'm not one really to endorse this word, but....
Posted by 17hens (Member # 23747) on :
Marie1959,
Your symptoms sound just like mine, with the emphasis on fatigue! I had a tick and a bull's eye with symptoms starting 3 days later. but I've tested neg. three times.
I've been to 9 docs to no avail. They either don't believe I have lyme or they don't know how to help after 12 total weeks of doxy.
Just found an LLMD who did a clinical diagnosis and says I have lyme and bart (which I've been thinking all along) and has a plan to treat me! I am so excited - there's hope at the end of this tunnel!
Please, please, please find an LLMD, with a good reputation, and wait however long it takes to see him. If you feel like I felt, you might wonder if you'll live long enough to make it to your appointment, but if you don't see an LLMD, there's a good chance you'll be on a long journey to nowhere.
Just speaking from experience. Best wishes!
Posted by treepatrol (Member # 4117) on :
Get a LLMD and have him prime the pump so to speak get on abx's for a week then run the tests. All your antigens are bound to the spirochetes thats why there not showing up.
Posted by daisyrlb (Member # 15686) on :
Everyone shared really good info above.
The only thing I can add, please do not do what I did. BE SURE YOU DO MAKE THE APPT WITH A LLMD AND FOLLOW THROUGH.
What I did? After being bit by tick, developed bulls eye rash, had text book Lyme symptoms, then went to MD in our small town (as that huge bulls eye rash freaked me out).
MD saw rash and said very seriously "Looks like Lyme Disease rash...blah, blah blah." Left room and came back. "I'm just going to write in your chart "malaise, nothing about Lyme, and send you to the ID specialist." (Yeah, because that was in a town where the #1 money raiser is tourism. Hello?! Not politically correct to get Lyme there. Definetly do not want to have to report it so sent me to the big city.)
The ID was booked up for a month and he was the RUDIST doctor I've ever seen in my life. Since Oklahoma doesn't have Lyme Disease...I didn't have Lyme Disease...and I was just getting old (and that was the nicest things he said. I was 49 then)!
Because of that awful experience I put off treatment for 14 months until my health and mental health hit rock bottom. Putting off getting help--BIG MISTAKE.
Thank God I did get the help I needed and have my life back. (Had to go out of state. It was worth it.)
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