posted
My wife does not have a lot of faith in the treatment she is getting from her LLMD. He has her on a low dose ABX treatment. We have been under his for about 6 months with no great difference.
Here background is similar to many stories around here. She has had lyme for at least 7-8 years, probably many more. We used to live in upstate NY. We've been bouncing from doctor to doctor for the past 5 with no luck. Diagnosed with fibro, depression, etc. Doctors gave her short duration ABX and she would get better, only to relapse in weeks/months.
A friend mentioned Lyme are we started down our current path. She was tested at Igenex and while not CDC level, there was enough for a diagnosis on her western blot. We are currently seeing a LLMD in Missouri (one with a disease named after him). What she has been prescribed so far is:
Doxy 300mg for 3 months Azythromycin for 3 months Flagyl for one week at the end
Every time there was a change my wife pushed for it because there was no change or she was getting worse. When he did change meds he wanted her to switch from one to another and not overlap. But since my wife had refills there was a period where she was taking all three since on was not working and that we the best she felt during the whole treatment. When the doxy and flagyl ran out she slipped back.
When we shared this information with the doctor, he still does not want her taking more than one ABX. The doc states he does not understand what is going on and she should be getting better. He wants he general MD to test to look for something else. That is were we have been for the last 5 years. We didn't expect this from a LLMD. We want a more aggressive treatment.
Overall she is slightly better than when we started treatment, but most days she is in bed 90% of the time.
My wife thinks only IV will help. I see many people here on a more aggressive oral ABX treatment. I would like to try that first due to cost, but then I am not the one sick.
We are located in Atlanta. We were considering going to Dr J in SC/NC but warning bells went off when we called him. If he wants an IV treatment, they told us it would be $20K for 6-8 weeks and we had to get the IV meds from them. This seems like they are more interested in $ than us.
Does anyone have any suggestions on what we should do? Should we switch? Does anyone have any first hand recommendations for LLMD? We are running into a lot of ``clinics'' that only seem to be in it for the money.
Sorry about the long post
Thanks, B&M
Posts: 65 | From Georgia | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry to hear about your long rocky road. I sigh just thinking about all you've been through.
Often docs will dose those who are very sick, elderly, very young, etc with low dose antbiotics.
I assume you know about the herxheimer reaction?
It can kill people and it has. It is nothing to mess with. If your wife has been sick for so many years.. a higher dose can do much more damage to her than others who have been sick a shorter time.
That said...
If you are unhappy with the protocols... try seeing another doctor. I know you think it sounds like they may only be interested in money when you call places.. but trust me.
There are many more complaints when folks aren't told up front the costs of the IV treatment and are surprised. They tend to freak totally.
Keep in mind the drugs cost bundles.. and the Home IV places cost too. My Rocephin was $2,000.00 per DAY for 1 gram only. That did not include the nurses, supplies, etc... just the drug itself.
When they upped the dose to 2 grams a day.. it was $4,000.00 per day for just the drug.
The restriction of getting meds from Dr. J's office directly MAY be because Dr. J was run through the wringer by the IDIOTS in NC (Medical Board- Health Dept, etc) and he may have to do it that way now.
I can't say for sure.. but that is my bet.
But if you can't work it out with your LLMD... please head to another.
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I don't know....I'm on 4 abxs on my LLMDs protocal. Rifampin, Biaxan, Bactrim, & Tinidimax. My LLMD doesn't waste time...no improvement or slow spiralling downward switches protocal.
My sister was put on Ceftin alone while pregnant during lyme treatment.
I'd call and really ask why doc is being so "careful". Did he get accused of "questionable treatments' from any state board? One never knows what these poor docs go thru in the lyme world.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Have you tried Progressive Medical on Shallowford Road just north of Atlanta? My wife is seeing Dr. B. Oral Abx treatment started 7 weeks ago after Igenx test, CD57 test and long term diagnosis led to Lyme.
-------------------- Here for my wife who was diagnosed with Lyme in the Fall of 2007. Diagnosed after numerous visits to the dr and a Igenex positive test for chronic Lyme. Posts: 34 | From North Georgia | Registered: Jan 2008
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posted
There really is no way of knowing how patients will react to meds; it is quite different among them even with the same drugs. So, docs have to feel their way sometimes, especially with people who have been sick for a long time.
Also, chronic lyme may be treatable but not curable. The goal is to become more functional without breaking the bank or incurring damage from a herxheimer.
That said, patients must decide for themselves when it is time to move on, but must give the current doc the chance to do his/her thing for an adequate amount of time. No formula for knowing when an adequate amount of time has passed.
Posts: 8430 | From Not available | Registered: Oct 2000
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
There is a LLMD in Louisiana if you are interested.
May be closer to Ga.
PM me if you are interested.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I am really sorry your wife is having such trouble getting care she feels is appropriate.
Everyone has already given you better medical advice than I can. I would like to add suggestions your wife can do in addition to the above.
In addition to the LLMD, find an integrative doctor. www.acam.org is a great place to start. An integrative doctor is going to look beyond just lyme. Your wife most likely has other issues as a result of lyme and the abx to treat lyme such as leaky gut, yeast, B-12 and other nutritional deficiencies. Any of these and other possibilities can contribute to and complicate her symptoms and healing. LLMDs are not usually well trained in whole body healing although many are getting there in their attempts to heal us.
On her own, she can try a vegan diet (no animal products of any kind) for two weeks and see if her symptoms improve. This is the least inflammatory diet and if symptoms improve, it could indicate a leaking gut and yeast. This was very helpful in my case and led to a bloodtest for food allergies. Once my allergic foods were identified and removed from my diet, my symptoms reduced by a significant 80-90%. I did not have to remain on the vegan diet.
I had to find a doctor who believed and was trained in such things. The website listed above is how I found my doctor.
Now I am fortunate to have found an LLMD who has extended her education to whole body care. As she said, "When you get this sick, it is never just one thing". That has been so true in my case.
lyme, babesia wa-1, mycoplasmas, chlamydia pneumoniae, EBV, QFever, Tapeworms, H. Pylori, Strep, leaky gut, heavy metal toxicity, yeast.
I responded well to proper treatment from the start and I know that adjusting my diet has given my body the help it needed to heal.
A recent gene test reveals I am lacking in the genes required to produce glutathione. So take all the toxins from the bugs, metals, abx, NSAIDS, it will take a long time to clear my body.
Your wife needs this kind of indepth analysis.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
The most frustrating part is the doctor stating he wants to send here back to get regular doctor for more tests.
We spent 5 years of tests fining nothing to come up with diagnoses of CFS, fibro, & depression.
The doc states that he has never had someone not improve on this low dose approach. And he has been doing this for 20+ years.
I should have mentioned that she is also taking the bruhner herbal protocol. My wife swears by Smilax as a detoxifier.
If a combination of ABXs appers to work for her, I don't see why the doctor is not willing to try it. She will probably still cycle and have bad days, but her good days were so much better.
Posts: 65 | From Georgia | Registered: Oct 2007
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posted
The doc states that he has never had someone not improve on this low dose approach. And he has been doing this for 20+ years. ====================
I would suspect that the patients who don't respond LEAVE.
His health has not allowed him to keep up with the latest treatments in my humble opinion.
The doctor in Louisiana is very good if that is closer than Springfield, MO.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
B AND M, i'm so sorry for all you both have been thru!
you've received excellent advise!!
yes, if you want missouri or louisiana info, PM me; i'd be happy to give you some specific details i have!
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-------------------- Here for my wife who was diagnosed with Lyme in the Fall of 2007. Diagnosed after numerous visits to the dr and a Igenex positive test for chronic Lyme. Posts: 34 | From North Georgia | Registered: Jan 2008
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bettyg
Unregistered
posted
bob, yes dr. c treats ILADS; has many lymenet members here! no. 1 in MIDWEST!!
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