posted
Hello. Finally got my lyme results from mdl. My ilads dr says I'm slightly positive. Have no idea what that means he ordered a 30 treatment of oral rocephin. The results are: Elisa positive Western blot- igm band 23 Igg bands 41, 39, 31, 18 So what does slightly positive mean? I have been feeling pretty horrible for almost 4 mths now. Had lyme undiagnoses in 97. Finally treated in 99 with IV rocephin for almost a year and half. Was feeling great up until 4 mths ago.
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You are not CDC positive but you have a positive ELISA and some bands on the western blot, so that looks like it needs treatment. CDC positive is something they require for reporting cases, and does not mean you need it for treatment, especially in combination with symptoms.
Don't know what you mean by "oral rocephin." Ceftin?
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is no such thing as "slightly" positive.
A positive ELISA, with symptoms, speaks volumes. That's pretty clear, right there.
There is a huge diffence in whether a western blot test is CDC positive and whether a person has lyme. Many very ill with lyme will not have a CDC positive western blot test result.
Your doctor does not sound at all like a true "lyme doctor" - I strongly suggest finding an ILADS-educated LLMD.
A "30 treatment" (assuming you mean 30 DAY treatment) is NOT enough and lyme should NEVER be treated with just one medication, alone.
Your lab results can be explained below and history, symptoms and physcial / clinical presentation is all also a huge part of diagnosis.
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.
posted
The doctor I saw was sent to me from this board as an ilads doctor. He took insurance as I needed someone who did since I am on disability. Maybe he is more conservative. I do plan on following up with him while in the mean time looking for another LLMD.
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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posted
Also the med is 500 mg 2x a day of cefuroxime axetil. He said this is oral rocephin. I had 2 grams of IV rocephin. For almost a year and a half in 1999.
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It may have two names, but it's still just one Rx
for a very short time to be limited to 30 days - and no attention to the cyst form with other Rx.
I really wish you no stress. Just want to be sure you have the kind of treatment you need, for success.
Not all names sent from here are necessary fully educated LL doctors. Some names slip by. Full "vetting" a potential doctor is not done by anyone here and a referral may not have many successful patients behind it.
However, the fact that he is actually covered by insurance might explain a few things and what seems like ignorance about "slightly positive" and prescribing just ONE Rx and not addressing the cystic form that requires different classification of Rx -
- well, that might be "required" as part of the practice he is with or with insurance. He would not be able to "think" or act for himself in all ways. The insurance company will not allow it.
With all the political and legal pressures on LLMDs, some have drastically changed both their communication with patients to be more guarded and also changed their treatment approaches.
His saying "slightly positive" may have referred to the limitations of the test with the ridculous CDC criteria - and not your diagnosis. If he thinks YOU are slightly positive, however, that is a huge red flag.
Political / legal pressures could explain why a doctor who may have been more thorough is now unable to provide good assessment / treatment.
You might talk with some members of all the area lyme support groups within a radius of this doctor for some insight.
If he's slipped due to political / legal pressures, there may still be some ways to work with him. If he just really does not possess the skill required, it's important to know that, though.
I hope you were also assessed for other tick-borne infections but I'm not sure I would trust him to have full knowledge or access to the best tests (which are not the best determining factor, either).
As you work through your next step, it's important to be on PROBIOTICS so as to (hopefully) prevent a systemic candida infection. I hope he told you that. Olive Leaf Extract can also be helpful.
and, vital to be on some kind of liver support - for protection and an easier time tolerating treatment. Most LLMDs will advise this, too.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
I know this must be a rough time and it's hard to hear questions about the treating doctor. As for needing a doctor who is covered by insurance, it's very hard to find so you may have to piece together some key elements on your own.
A good strong remission is certainly possible. Many have gotten there (but it takes a combination approach and longer than just 30 days).
I do wish you the best as you work through all this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
As far as probiotics he did tell me what to get. He also did PCR testing for other tick born illnesses. All negative. I loved my LLMD I saw in the 90s. But he is no linger practicing. I wish I could afford to see an LLMD that doesn't take insurance again, but this time I have no choice.
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad to see he cautioned to take probiotics.
Understandable about how insurance is your "ticket" for now. Might you be able to push him to extend treatment beyond the 30 days - make it a combination more aligned with the Burrascano guidelines & also address the cystic form?
Burrascano guidelines are in the "WHY an ILADS educated LLMD?" thread.
Not all coinfection tests can be trusted so be sure to look at the various symptoms lists in the "diagnosing" thread.
Lyme is never just lyme.
You might be able to piece together the parts of treatment missing with very specific supplements.
Rife might also be an option. -
[ 07-23-2013, 04:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Ask at your area support groups in case someone has one they could let you use, has one for sale or knows how else you might access one.
LL Naturopathic links here, too.
While you may not have that option in reach, the articles & books can help when we have to piece some parts together for ourselves. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
It could also be that your response to the meds will dictate what happens after that 30 days.
Posts: 2888 | From USA | Registered: Mar 2004
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